PodcastDX

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Memory Villages explores the promise and the questions surrounding dementia villages—care communities designed to feel more like neighborhoods than institutions. We discuss how familiar surroundings, routine, meaningful activity, and freedom of movement may support dignity and engagement, while also examining the important concerns: cost, access, staffing, evidence of benefit, safety, and ethics.

The United States has been slower than countries such as the Netherlands and Canada to build full residential memory villages. The reasons appear to be less about lack of interest and more about how long-term care is financed, the cost of creating a village-scale setting, and the need for stronger evidence that the model improves outcomes—not just appearances.

The takeaway: a beautiful setting alone does not guarantee good care. Families should look closely at staff training, individualized support, daily activities, transparency, and how a community protects both safety and autonomy.

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In this PodcastDX episode, Lita and Jean Marie unpack Ebola as a severe but not casually spread viral disease, explaining that infection requires direct contact with blood or other body fluids or contaminated materials, not simple proximity or everyday social contact. They outline key facts about animal reservoirs (likely bats), how spillover into humans occurs, and why understanding zoonotic origins helps shape outbreak prevention in affected regions.

The conversation walks listeners through typical Ebola symptoms, the incubation period, and why early recognition and intensive supportive care—fluids, electrolytes, careful monitoring—can be lifesaving despite the virus's high average case‑fatality rate. The hosts discuss recent outbreaks in Central Africa, how tools like surveillance, contact tracing, safe burials, isolation, infection‑control practices, and targeted vaccination work together, and they debunk common myths about airborne spread or presymptomatic transmission.

Lita and Jean Marie also explain that available vaccines and monoclonal antibody treatments apply mainly to the Zaire species, making strain identification crucial, and highlight why survivors need long‑term medical and emotional support. Throughout the episode they emphasize community education, stigma reduction, and practical prevention—especially for families, healthcare workers, and travelers—showing that while Ebola is dangerous, accurate information and coordinated public health action can contain outbreaks and replace fear with wise, compassionate response.

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In this week's episode of PodcastDX, Lita and Jean Marie break down why sunscreen is about far more than avoiding a bad sunburn—it's everyday cancer prevention. They explain how UV damage happens while driving, walking the dog, or sitting by a window, and why "broad spectrum" protection against both UVA (aging, deeper damage) and UVB (burns) really matters.

The episode covers the newly FDA‑approved ingredient bemotrizinol, what SPF numbers actually mean, and why using enough product and reapplying is just as important as what's on the label. Together they walk through commonly missed spots (ears, neck, scalp, feet, around the eyes), the difference between "water resistant" and waterproof, and why sunglasses and winter sunscreen—thanks to reflection from water and snow—belong in a complete sun‑safety routine.

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In this solo PodcastDX episode, Lita introduces the concept of the vagus nerve and explains why it has become such a focus in wellness, neurology, psychiatry, and online health spaces. She describes the vagus nerve's path from brainstem through neck, chest, and abdomen, highlighting its role in heart rate, breathing patterns, digestion, and the body's stress response, and explains that most people using the term "reset" are really talking about wanting to feel less stuck in a chronic high‑alert or fight‑or‑flight state.

Lita then breaks down the different things people may mean by "vagus nerve stimulation," from implanted medical devices to non‑invasive transcutaneous stimulation, and to everyday practices like breathing exercises, humming, singing, cold exposure, movement, and meditation. She emphasizes that these are not equivalent, that each has different levels of evidence and risk, and that implanted vagus nerve stimulation has established—but carefully defined—roles in difficult‑to‑control epilepsy, treatment‑resistant depression, and selected cases of rheumatoid arthritis, along with potential side effects such as voice changes, cough, throat discomfort, and surgical risks.

The episode spends time on transcutaneous vagus nerve stimulation (tVNS), explaining that early research is promising but not definitive for conditions like anxiety, depression, insomnia, migraine, pain, autonomic dysfunction, and inflammatory conditions. Lita cautions against blanket claims about "frequencies" that reset the nervous system, noting that real neuromodulation protocols are highly specific to device parameters, placement, clinical context, and individual variability, and that the autonomic nervous system itself is a dynamic network influenced by sleep, trauma, hormones, pain, illness, medications, and environment.

Throughout, she offers a practical framework for listeners who are eager for relief but wary of marketing promises, encouraging them to ask concrete questions about device type, studied condition, trial design, sample size, meaningfulness of benefits, side effects, and whether a product is truly a medical treatment or a wellness gadget borrowing medical language. The episode closes by affirming the genuine promise of bioelectronic medicine and vagus‑focused therapies, while reminding listeners that "vagus nerve reset" is a catchy phrase for a complex field—not a diagnosis, not a cure‑all, and never a substitute for careful, shared decision‑making with qualified healthcare professionals.

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"When Seconds Matter" is a strong, urgent PodcastDX episode. It is a personal story about emergency response and the critical minutes before help arrives. It's focused on recognizing danger early, calling911 fast, starting CPR, and using an AED when needed.

When Seconds Matter explores what to do in a true medical emergency, when every moment can determine whether a person survives. Drawing from a deeply personal story, the episode explains how to recognize signs of heart attack, cardiac arrest, drowning, and collapse, why immediate911 activation matters, and how CPR and AED use can save a life before EMS arrives.

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After a heart attack, the story doesn't end in the arteries. In this episode of PodcastDX, Lita and Jean Marie explore new science showing how the heart, brain, and immune system talk to each other during and after a heart attack—and how that three-way conversation can either protect the heart or make damage worse. We break down a "triple‑node" loop discovered in recent research, where vagus‑nerve sensory fibers in the heart send danger signals to the brain, the brain ramps up fight‑or‑flight output, and the immune system responds in ways that can change healing, scarring, and heart rhythm.

Using plain language, we walk through what immune cells like neutrophils and macrophages do in the damaged heart, why inflammation is helpful at first but harmful if it lingers, and how this ties into dysautonomia and other nervous system issues some people face after a cardiac event. We also talk about what this emerging "heart–brain–immune" axis could mean for future therapies—from calming overactive nerve circuits to targeting specific inflammatory pathways—while emphasizing that these findings are early and mostly from animal models. Whether you are a patient, caregiver, or just curious about how interconnected the body really is, this episode offers a hopeful, accessible look at what comes next in heart attack research and recovery.

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This week's episode does not have a guest, we are going to be discussing blood and tissue donations in medicine. The Vital Role of Blood and Tissue Donation in Modern Medicine Blood and tissue donation are indispensable components of modern healthcare, providing life-saving resources for a wide range of medical conditions and emergencies. Blood donations are crucial for patients undergoing major surgeries, battling cancer, managing chronic illnesses, and recovering from traumatic injuries. A stable supply of blood and its components, such as plasma, is essential for medical treatments and to create life-saving medicines that can treat over 50 diseases. Without voluntary donations, surgeons and healthcare providers would lack the necessary resources to support patients whose conditions deplete their own blood or require transfusions.

The continued availability of donated blood and tissue strengthens patient care and offers hope to those in critical need. Maintaining an adequate and diverse blood supply is a shared responsibility, ensuring that patients, including children and organ transplant recipients, have access to these vital resources. While the provided search results focused heavily on blood, tissue donation similarly contributes to medical advancements and patient well-being, aiding in reconstructive surgeries, burn treatments, and other therapeutic applications.

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Early colorectal cancer usually causes no symptoms, which means the only way to catch it at a truly curable stage—or even prevent it altogether—is through regular screening, especially colonoscopy. During a colonoscopy, doctors can not only find cancers earlier, when treatment is more effective and survival rates are much higher, but also remove precancerous polyps on the spot, stopping many cancers before they ever form. National guidelines now recommend that average‑risk adults begin colorectal cancer screening at age 45 and continue at regular intervals, using colonoscopy every 10 years or other approved tests, because this simple step has been shown to significantly lower both the incidence of colorectal cancer and deaths from the disease.

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Today we're continuing our Medicine in Transition theme with a topic that is deeply personal, professionally important, and long overdue. This episode is titled "The Shift of Dementia Care: From Control to Connection."

But we're not doing this one alone. We're joined by a special guest, Jennifer Stoner.Jennie is a retired professor from Aurora University in Aurora, Illinois, where she taught in recreation administration and therapeutic recreation, helping train future professionals to design meaningful, person‑centered programs for older adults and people living with disabilities. She has spent much of her career at the intersection of aging, recreational therapy, and program administration, with a special interest in how purposeful leisure and engagement can support quality of life for people living with dementia.

Through her academic work and consulting, she's been part of a broader movement to move dementia care away from simply controlling behaviors and toward connection, dignity, and participation—in long‑term care, adult day programs, and community settings.

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In this week's episode, "Cancer Care in Transition: Precision Medicine, Immunotherapy, and Patient Choice," we look at how cancer treatment is changing at the exact moment when patients are trying to move from crisis mode into something like a new normal. Precision medicine now uses a person's genes, tumor markers, and even lifestyle to match them with targeted drugs or immunotherapies instead of one‑size‑fits‑all chemo, while immuno‑oncology has created a growing group of survivors living with long‑term effects and unique follow‑up needs. At the same time, shared decision‑making has become essential: patients are being asked to weigh complex options with different risks, benefits, costs, and impacts on quality of life—and their preferences, values, and tolerance for uncertainty can dramatically shape which path is "right" for them.

We'll talk about what this transition looks like in real life, how precision tools and immunotherapy are reshaping survivorship, and how patients and caregivers can find their voice when the choices are anything but simple.

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The dark side of advocacy is that the same social media platforms that help health advocates reach millions can also expose them to relentless trolls, coordinated pile‑ons, and even threats to their safety and careers.

Studies of physicians and public‑health advocates show that a large share—sometimes more than half—have been personally attacked online for speaking about vaccines, gun violence, or other health issues, facing abuse that targets not just their ideas but also their gender, race, disability, or identity. What starts as "just comments" can quickly escalate into doxxing, harassment at work, bad‑faith complaints to licensing boards, and a level of stress that leads some advocates to scale back or leave social media altogether, even though their voices are needed to counter misinformation.

In this episode, we'll talk about what that experience looks like from the inside—and how health advocates can set boundaries, document abuse, and use digital safety resources so they're not forced to choose between protecting themselves and speaking up for their communities.

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Various Types of Dementia

This week on PodcastDX, we're stepping into the complex world of dementia—not as a single diagnosis, but as a family of conditions that affect memory, thinking, behavior, and independence in different ways. We'll introduce the most common types of dementia, including Alzheimer's disease, vascular dementia, Lewy body dementia, frontotemporal dementia, and mixed dementia, where more than one process—often Alzheimer's plus vascular changes—are happening in the brain at the same time. We'll also touch on less common causes, such as dementia related to Parkinson's disease, normal pressure hydrocephalus, repeated head injury, and certain infections or genetic conditions, and talk about why getting the right type matters for treatment, planning, and support.

Key Takeaways * Dementia is an umbrella term, not just Alzheimer's. * The "big five" you'll hear about are Alzheimer's, vascular, Lewy body, frontotemporal, and mixed dementia. * Understanding the type of dementia can guide better care, expectations, and resources for families.

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"Rethinking DX: A Digital DSM" looks at how the Diagnostic and Statistical Manual of Mental Disorders (DSM) quietly shapes almost every part of mental health care—from who gets a diagnosis and insurance coverage to how people understand their own symptoms and identities. In this conversation, Lita and Jean Marie unpack what the DSM actually is, why the current DSM‑5‑TR matters, and how a future, fully digital "DSM‑6" could function as a living document that updates more quickly, links to decision‑support tools, and better integrates real‑world data from electronic health records.

They explore the growing push to move beyond symptom checklists and include factors like biology and inflammation, social determinants (poverty, racism, housing instability, community violence), culture and language, life stage, trauma history, and even nutrition and the gut–brain connection when understanding mental health. The episode also imagines what a visit with a clinician using a digital DSM might look like—from plain‑language criteria and prompts about trauma and physical health, to culturally sensitive questions and age‑specific guidance—while encouraging listeners to bring their whole story to appointments, ask how environment and biology interact in their own case, and get involved in shaping future DSM updates through advocacy and lived‑experience input.

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Over the next decade, medicine won't just add new gadgets—it will change what it feels like to be a patient. In this episode of PodcastDX, we explore how AI as a clinical co‑pilot, stem cells and regenerative medicine, genomics and precision care, wearables, and hospital‑at‑home models could reshape everyday care. We talk about the promise of earlier detection and more personalized treatment, the risks around bias, privacy, and hype, and why equity and shared decision‑making must stay at the center as technology races ahead. Most of all, we ask how patients and caregivers can be partners—not passengers—in guiding the future of medicine.

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This week we are discussing the rise of a new type of health care where the patients play a vital role in their medical care. Patients as partners in care are at the heart of shared decision making (SDM), a model where clinicians and patients deliberately work together to choose tests and treatments that fit both best evidence and the patient's values and life context.

What shared decision making means * SDM is a collaborative process in which clinicians contribute clinical expertise while patients contribute their goals, preferences, and lived experience. * Core elements include at least two participants (patient and clinician), information sharing in both directions, building a shared understanding of options, and aiming for agreement on what to do next.

From paternalism to partnership * Historically, medical care was strongly paternalistic, with clinicians deciding and patients expected to comply, but from the 1970s onward, growing emphasis on autonomy and patient‑centered care began to challenge this model. * The term "shared decision-making" appeared in ethical discussions in the 1970s and early 1980s and gained momentum in the 1980s alongside evidence that patients increasingly wanted to participate in decisions.

Why patients as partners matters * SDM is associated with improved patient knowledge, more accurate risk perception, reduced decisional conflict, and treatment plans that better reflect what matters most to patients. * Studies link SDM to higher satisfaction, better adherence, improved quality of life, lower anxiety, and in some preference‑sensitive conditions, less invasive and sometimes less costly care.

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At a time when modern medicine is allowing people to enjoy longer, fuller lives, mortality is not always a chief concern. But when a serious illness occurs, the topic becomes unavoidable.

This became especially clear during the early days of the COVID-19 pandemic when hospitals were overrun with patients, many with grim prognoses. "The pandemic gave all of us a sense that life can be short and there's the very real possibility of dying," says Jennifer Kapo, MD, director of the Palliative Care Program at Yale New Haven Hospital. "It opened the door for us to talk more about death and have a better sense of our mortality."

Palliative care is a caregiving approach for anyone with a serious or chronic medical condition; its goal is to maximize quality of life and manage symptoms. In addition to helping patients and their families navigate difficult conversations and decisions, palliative care team members are attentive to "goals of care," which means understanding the patient's wishes and how medical steps can help achieve them.

For example, if a patient has a low likelihood of coming off a ventilator, that would be made clear to them, if possible, before they were put on one, explains Laura Morrison, MD, a physician in the Palliative Care Program.

"The pandemic highlighted the need for us to have more proactive and earlier conversations with patients and their families. If we gave them the chance to make a choice, some might say they don't want to die in an intensive care unit," Dr. Kapo adds.

Still, many people still aren't sure what palliative care really means. Below, we talk with a few members of Yale Medicine's program to better understand it.

How does palliative care differ from hospice care? Palliative care is a specialized model of care for people living with serious or chronic illnesses including cancer, heart and liver failure, dementia, and pulmonary disease.

Like hospice care, the focus is on maximizing comfort and quality of life. But palliative and hospice care differ in that hospice is for patients who are not receiving life-extending treatment, and is typically limited to the last six months—or less—of one's life. Palliative care, conversely, can be integrated into a patient's medical care at any point during their illness, from diagnosis to end-of-life, and can include life-extending medical treatment.

"Essentially, palliative care is an extra layer of support for any patient who has a serious illness. That can include attention to pain and other symptom management, as well as help coping with the stress of having the illness," Dr. Morrison explains. "We also focus on facilitating communication between patients, their families, and medical providers."

The Palliative Care Program has 35 members in various disciplines, including physicians, nurses, social workers, a chaplain, a psychologist, and a pharmacist. Palliative care services are offered to all patients at Yale New Haven Hospital and Smilow Cancer Hospital, and at Smilow's outpatient offices. And it provides care on a spectrum, based on what patients and their loved ones need in the moment.

"At the beginning of a serious illness, a patient's needs might revolve around addressing anxiety over their diagnosis," Dr. Kapo says.

Plus, taking care of the entire family, and not just the patient, is an important element, Dr. Kapo adds. "Our goal is to provide the best quality of life possible to patients and their families, which is why our bereavement program is also an important element. Our care does not stop when a loved one dies," she says.

How is palliative care broached with patients? Because Yale Medicine offers palliative care to hospitalized patients, that is often where someone first hears about the model of care.

"We typically structure the conversation broadly at first and ask a patient what they understand about their illness, what they have heard about it, and what they believe about it," Dr. Kapo says. "If a patient has no idea that death is a real possibility, we spend a lot of time sharing information. Or, if they have been sick for five years and know that time may be short, we talk about what is important to them and what they want to do with the time they have left."

That, Dr. Kapo says, opens a conversation about a patient's values. "We listen very carefully and get a sense of whether this is a patient with goals of wanting to extend life no matter what it takes, or someone who is more interested in quality of life," she says.

The goal of palliative care is not to change a patient's mind about their decisions, she adds. "It's to listen to a patient's story and support their decisions," Dr. Kapo says. "If someone tells me that they will fight for every last second of life, no matter what the cost might be physically, then we honor that."

Meanwhile, a social worker can provide support and address any psychosocial issues. For example, if someone is just diagnosed with a critical illness, their primary concern might be how they can still work and pay their bills. The team's social worker can help them navigate the logistics of their health insurance coverage and sick time policies, among other issues.

With other patients, the social worker might help explain a diagnosis to a patient's children in an age-appropriate way.

The program also has a medical-legal partnership that assists patients with estate planning; navigating entitlements, including Social Security and insurance; and advance directives (a living will), a written statement of a patient's wishes regarding medical treatment in the event they are unable to communicate them to a doctor.

What are the benefits of palliative care? Palliative care is by no means a new medical concept. In fact, it was all medical providers had before many current treatments were invented.

"Back in the early 20th century, before antibiotics and chemotherapy and many other therapies we now have, physicians provided palliative care as their treatment," Dr. Morrison says. "Our job was to be present, hold hands with patients, and relieve symptoms as it was possible. Morphine might have been given for pain."

Today, palliative care encompasses not only all the advanced medical treatments and medications now available, but it is increasingly being woven into care for chronic conditions.

Meanwhile, research has shown that palliative care is effective. One study published in The New England Journal of Medicine in 2010 examined patients newly diagnosed with metastatic non-small cell lung cancer. One group received standard oncologic care; the other had standard oncologic care with palliative care added on.

Those in the palliative care group reported less anxiety and depression and were also hospitalized less. They also lived a month longer. Subsequent similar studies expanding to other populations with advanced serious illness have also shown positive outcomes. (CREDITS: YALE MEDICINE)

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This week we discuss the current status of Mental Health Care. Mental health care is changing, but most experts argue it is not changing fast enough relative to the need, especially on access, equity, and workforce.

Where change is too slow * Unmet need is huge. In the U.S., millions with a diagnosable condition still receive no treatment each year; a recent national report notes that many adults with mental illness remain uninsured or unable to access care. * Global workforce shortages. Nearly 50% of the world's population lives in countries with fewer than 1 psychiatrist per 100,000 people, which severely limits access. * Specialist shortages in high‑income countries. Projections for the U.S. estimate a shortage of roughly 14,000–31,000 psychiatrists, with over half of counties having none at all, and this gap may persist for decades without major policy changes. * System design still hospital‑centered. The WHO notes that two‑thirds of scarce mental health budgets still go to stand‑alone psychiatric hospitals rather than community‑based services, despite all countries having signed on to a reform plan. * Persistent inequities. Underserved groups (rural communities, people of color, LGBTQ+ people, low‑income populations) face additional barriers like providers not taking Medicaid/Medicare, language gaps, and local provider deserts.

What is changing quickly * Telehealth and virtual care. Teletherapy and virtual mental health visits expanded dramatically and now make it easier to reach people regardless of location, with greater scheduling flexibility and fewer logistical barriers. * Digital mental health tools. Apps and web programs delivering structured therapies (for example CBT modules) can reduce symptoms of depression and anxiety with moderate to high effect sizes, including in low‑resource settings. * New care pathways. Systems are experimenting with brief interventions, stepped‑care models, peer‑support programs, and task‑sharing where general health workers and community providers deliver basic mental health support. * Policy and parity efforts. Some U.S. states are strengthening mental health parity enforcement, improving network adequacy, and changing insurance rules to make psychiatric medications and services easier to access. * Stigma is slowly decreasing. Recent commentary highlights that more people are willing to seek help, pushing demand higher and driving interest in more personalized, data‑driven psychiatric care.

Big picture: mismatch between need and pace * Demand is outpacing innovation. Trauma, pandemic aftereffects, economic stress, and social unrest have increased mental health needs faster than systems can expand the workforce or redesign care, deepening inequities. * Technology helps but isn't a cure‑all. Digital tools and telehealth extend reach, but quality is uneven, many apps lack strong evidence, and people with the most severe conditions still need intensive, in‑person, multidisciplinary care. * Global agencies explicitly say pace is inadequate. The WHO's own assessment is that "change is not happening fast enough," framing the current situation as one of ongoing need and neglect despite clear evidence of what would work better.

What would "fast enough" look like? * Large‑scale investment in community‑based services and integration of mental health into primary care, shifting funding away from institutional‑only models. * Aggressive strategies to grow and sustain the mental health workforce (training, better reimbursement, support to prevent burnout, incentives for underserved areas). * Wider, evidence‑based use of digital interventions and telehealth, with standards for safety, privacy, and effectiveness so people can trust what they are using. * Stronger parity enforcement and policies that make it actually practical—not just theoretically covered—to find and afford care.

If you think about your own community or the people you work with, do you feel the main barrier is access (finding/affording care), quality (getting the right care), or something else like stigma or navigation?

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The integration of Artificial Intelligence (AI) into post-injury rehabilitation is transforming recovery paradigms by enabling personalized, adaptive, and efficient rehabilitation pathways tailored to individual patient needs. This podcast reviews the current advances in AI applications that facilitate assessment, monitoring, and optimization of rehabilitation programs following injuries. Through machine learning algorithms, wearable sensors, and predictive analytics, AI enhances the precision of therapy plans, tracks patient progress in real-time, and predicts recovery trajectories. The discussion includes the benefits of AI-driven rehabilitation, including improved functional outcomes, reduced recovery times, and increased patient engagement. It also addresses challenges such as data privacy, algorithmic bias, and integration with clinical workflows.

Transforming recovery paradigms Traditional post‑injury rehab relies on periodic in‑person assessments, therapist intuition, and standardized protocols that only partially account for individual variability. AI is shifting this model toward:
Continuous, data‑driven care: Instead of snapshots in clinic, rehab can be informed by near real‑time streams of kinematic, physiological, and behavioral data from wearables, smart devices, and robot interfaces.
Dynamic adaptation: Therapy intensity, task difficulty, and exercise selection can be automatically adjusted based on ongoing performance, fatigue, and recovery trends, rather than fixed schedules.
Precision rehabilitation: Algorithms can identify which patients are likely to respond to specific interventions (e.g., constraint‑induced movement therapy vs robotics) and tailor plans accordingly.

This moves rehabilitation from a "one‑size‑fits‑many" paradigm toward precision, context‑aware therapy, analogous to precision oncology but focused on function and participation.

Assessment, monitoring, and optimization AI for assessment * Sensor‑based movement analysis: Machine learning models process accelerometer, IMU, EMG, and pressure data to quantify gait symmetry, joint kinematics, balance, and fine motor control with higher resolution than visual observation alone.
Automated scoring: AI can approximate or support standardized scales (e.g., Fugl‑Meyer, Berg Balance Scale) by mapping sensor features or video-derived pose estimates to clinical scores, reducing inter‑rater variability and saving clinician time.

Continuous monitoring * Home and community tracking: Wearable and ambient sensors enable monitoring of daily steps, walking speed, arm use, posture, and adherence to exercises outside the clinic, feeding rich longitudinal datasets into AI models. * Real‑time alerts: Algorithms can detect abnormal patterns—such as increased fall risk, reduced limb use, or signs of over‑exertion—and flag the clinician or adjust digital therapy content automatically.

Optimization and decision support * Predictive models: Using historical data, AI can forecast functional gains, plateau points, or risk of complications (e.g., falls, readmission), supporting individualized goal‑setting and resource allocation. * Reinforcement learning and "digital twins": Emerging work in neurorehabilitation treats rehab as a sequential decision problem, using model‑based reinforcement learning and patient "digital twins" to recommend optimal timing, dosing, and progression of interventions over weeks to months.

Technologies: ML, wearables, analytics * Machine learning algorithms:
- Supervised ML classifies movement quality (normal vs compensatory), detects exercise type from sensor streams, and estimates clinical scores.
- Unsupervised learning clusters patients into phenotypes (e.g., gait patterns after stroke), revealing subgroups that respond differently to certain therapies.
- Reinforcement learning and contextual bandits explore which therapy adjustments yield the best long‑term functional outcomes for a given individual.
- Wearable sensors and robotics:
- Inertial sensors, EMG, pressure insoles, and exoskeleton sensors capture high‑frequency movement and muscle activity data during training.
- Robotic devices (upper‑limb exoskeletons, gait trainers) coupled with AI can modulate assistance, resistance, or task difficulty in real time based on performance and predicted fatigue.
- Predictive and prescriptive analytics:
- Predictive analytics estimate trajectories (e.g., time to independent walking, expected upper‑limb function) to inform shared decisions with patients and families.
- Prescriptive analytics recommend therapy intensity, modality mix, and scheduling to maximize functional gains under resource constraints.
Benefits: outcomes, efficiency, engagement * Improved functional outcomes: Studies report better motor recovery, gait quality, and ADL performance when AI‑assisted training is used—especially when robotics and intelligent feedback are involved.
Reduced recovery time and resource use: More precise dosing and earlier identification of non‑responders can reduce ineffective sessions, shorten time to key milestones, and support safe earlier discharge with robust remote follow‑up.
Increased adherence and engagement: AI‑driven digital rehab platforms use gamification, adaptive difficulty, and personalized feedback to keep patients engaged in home programs, improving adherence compared to static paper instructions.
Support for clinicians: Instead of replacing therapists, AI can offload repetitive measurement tasks, highlight concerning trends, and offer data‑driven suggestions, allowing clinicians to focus on relational, motivational, and complex decision‑making aspects of care.
Challenges and ethical considerations * Data privacy and security:
- Rehab AI often relies on continuous collection of sensitive motion, physiological, and sometimes audio/video data, raising questions about consent, storage, secondary use, and breach risk.
- Approaches like federated learning and on‑device processing are being explored to reduce centralization of identifiable data while still enabling model training.
- Algorithmic bias and fairness:
- If training data under‑represent older adults, women, certain racial/ethnic groups, or people with severe disability, AI models may misestimate performance or risk for those groups, potentially widening disparities in rehab access and outcomes.
- Ongoing auditing, diverse datasets, and participatory design with patients and clinicians are needed to ensure equitable performance.
- Integration with clinical workflows:
- Many AI tools are developed in research settings and are not yet seamlessly integrated into EHRs, scheduling systems, or therapist documentation workflows.
- Poorly integrated tools risk adding documentation burden or "alert fatigue," reducing adoption. Successful implementations co‑design interfaces with frontline therapists and physicians.
- Regulation, liability, and trust:
- It remains unclear in many jurisdictions how to regulate adaptive rehab algorithms (as medical devices, clinical decision support, or wellness tools) and who is liable when AI‑informed plans cause harm.
- Transparent, explainable models and clear communication to patients about the role of AI are critical for maintaining trust.
Case studies and emerging trends *

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The gut–brain revolution is about treating the digestive system and the nervous system as one integrated network instead of two separate organs that happen to share a body. The gut–brain axis is a bidirectional communication system: the brain influences digestion, motility, and gut sensation, while the gut and its microbiota send chemical, neural, and immune signals back to the brain that can shape mood, cognition, and even neurodegeneration. Central to this loop is the vagus nerve, the longest cranial nerve, which carries most of the traffic from gut to brain and modulates inflammation, intestinal permeability, and autonomic balance. When one side of this axis is struggling—chronic stress, trauma, infection, dysbiosis, "leaky gut," or ongoing inflammation—the other side often shows up with symptoms like anxiety, depression, brain fog, or functional GI disorders.

Because of this, "treating the brain" without addressing gut health, or "treating the gut" without considering mental health and stress physiology, often means chasing symptoms instead of root causes. Emerging evidence supports combined care plans that may blend nutrition changes, targeted probiotics, and anti‑inflammatory strategies with cognitive behavioral therapy, mindfulness, and stress‑reduction techniques to calm both the GI tract and the nervous system. Interventions that support vagal tone—such as paced breathing, certain forms of meditation, and gentle movement—may further help regulate this axis by improving autonomic balance and reducing inflammatory signaling between gut and brain. For patients and clinicians, the key message is that persistent "brain" symptoms might start in the gut, and chronic "gut" symptoms may be maintained by the brain, making integrated, two‑system treatment not a trend but a clinical necessity.

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Promising new cancer screening methods are pivoting toward multi-cancer early detection (MCED) blood tests (liquid biopsies) and AI-enhanced imaging, which aim to detect multiple cancer types from a single, non-invasive sample, often before symptoms arise. These technologies, including the Galleri test and Novelna's protein-based tests, analyze DNA, proteins, or methylation patterns to identify cancer signals. * Multi-Cancer Early Detection (MCED) Blood Tests: These tests, often called liquid biopsies, detect DNA or proteins shed by cancer cells into the bloodstream, identifying early-stage cancers (e.g., ovarian, pancreatic) that lack standard screening protocols. + Galleri Test: Analyzes chemical methylation patterns to detect over 50 types of cancer, with the potential to indicate the cancer's origin in the body. + Novelna's Test: An experimental test analyzing protein signatures, showing high accuracy in identifying 18 early-stage cancers, including 93% of stage 1 cancers in men. + TriOx Test: A new, Oxford-developed test showing high sensitivity in detecting trace cancer DNA. * AI and Machine Learning in Screening: AI is enhancing existing imaging techniques (e.g., mammography) to improve accuracy and efficiency in reading scans, reducing false positives. * Other Liquid Biopsies: Research into analyzing blood, breath, and urine for early signs of cancer, offering a less invasive alternative to tissue biopsies.

While offering immense promise for reducing cancer mortality, many of these technologies, including MCED, are still in research or early implementation phases, and they can produce false positives.

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Chronic illness is now the norm, not the exception, and our healthcare system is scrambling to keep up.

In this episode, "Chronic Illness Isn't Rare Anymore: Why The System Is Trying To Catch Up," we dig into why so many adults are living with at least one chronic condition, how the current system was built for short-term, acute care, and what that mismatch means for people trying to manage complex, lifelong diagnoses. We talk about the hidden costs of navigating appointments, medications, insurance, and burnout, and explore what needs to change—from prevention and policy to care teams and patient advocacy—to actually support those living with chronic illness today.

Chronic illness is no longer a rare, edge-case scenario; it is now a majority experience in the United States, with approximately 76% of adults living with at least one chronic condition. As of 2025, over half of U.S. adults suffer from two or more, making these conditions the primary driver of the nation's $4.5 trillion healthcare spending.

The healthcare system is rushing to "catch up" because the traditional model—designed for acute, short-term care—is failing to handle the, persistent, long-term, and complex needs of a majority-chronically-ill population.

The New Reality: Why Chronic Illness is Everywhere

Chronic diseases like heart disease, diabetes, obesity, and autoimmune disorders have reached epidemic levels due to a combination of factors, according to the Centers for Disease Control and Prevention (CDC) and other experts:

Aging Population: The number of Americans over 65 is growing rapidly, with over 58 million in this group, expected to increase significantly.
Lifestyle & Environment: Poor nutrition, physical inactivity, tobacco use, and excessive alcohol consumption are driving the increase.
Systemic Factors: Environmental exposures to toxins, chemicals in food, and stress from modern living contribute to high prevalence.
Rising Youth Rates: The prevalence of conditions like obesity and depression has increased among young adults.

Why the System is "Catching Up"

The system is undergoing a massive shift from "reactive" to "proactive" care, driven by necessity rather than choice.

The Financial Crisis: Chronic disease management accounts for nearly 90% of U.S. healthcare spending. If left unchecked, these costs could drive the healthcare system to collapse, making cost reduction for chronic conditions a top priority for 2025.
Ineffectiveness of Old Models: The "fee-for-service" model, which pays for volume, is being replaced by "value-based" care, focusing on results and preventing readmissions.
Integration of Technology: To manage the scale, the system is leveraging artificial intelligence (AI), telehealth, and remote monitoring to keep patients with chronic conditions at home and out of the hospital.
Focus on Root Causes: There is a move away from just managing symptoms to addressing root causes, such as nutrition, social determinants of health (housing, income), and reducing systemic inflammation.

Key Changes in the "Catching Up" Process

Redesigning Care: Moving toward "patient-centered" care, which focuses on empowering individuals to manage their own illnesses and providing more comprehensive support, rather than just treating symptoms as they appear.

Addressing Social Determinants: Recognizing that where people live, work, and age impacts their health, systems are expanding beyond the clinic to address food insecurity and safe spaces for exercise.
Preventive & Early Care: Increased focus on intervening early, especially in underserved, low-income, and marginalized communities that bear a disproportionate burden of disease.
Workplace Wellness: Companies are investing in preventative care, such as on-site health assessments and mental health support, to reduce the impact of chronic illness on productivity.

The shift from acute to chronic disease as the leading cause of death is forcing a comprehensive reinvention of the US health system.

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FROM SURVIVAL TO QUALITY OF LIFE: WHY OUTCOMES ARE BEING REDEFINED

THE FUNDAMENTAL SHIFT IN MEDICINE

For decades, medicine measured success through a singular lens: survival. Did the patient live? Did the procedure work? While these metrics remain important, healthcare is undergoing a profound transformation that redefines what "winning" actually means[1]. The new standard is no longer just extending life—it's enabling patients to live purposefully, functionally, and with dignity[2].

This shift reflects a critical insight: surviving is not the same as living well.

WHY OUTCOMES ARE BEING REDEFINED

Beyond Binary Success

Traditional outcome metrics operated in black-and-white terms. A femur repair was "successful" if the fracture healed—regardless of whether the patient could walk without pain, climb stairs, or return to work[3]. Today, healthcare systems recognize this approach as incomplete and outdated.

Patient-Reported Outcomes Measures (PROMs)

The healthcare industry is now systematically integrating patient voices into outcome measurement. These tools capture what patients actually experience: physical functioning, emotional well-being, social participation, and overall quality of life[4]. The Centers for Medicare & Medicaid Services (CMS) has formally incorporated patient-reported outcome measures into quality reporting frameworks, signaling a structural shift in how healthcare success is defined[5].

The Quintuple Aim

Modern healthcare reform is reframing success across five dimensions[6]:

· Patient Experience: Tailored treatments based on individual data and preferences

· Population Health: Proactive, preventative care delivery

· Cost Reduction: Connecting patients to appropriate care and reducing avoidable hospitalizations

· Provider Well-Being: Extending clinical reach through technology and team-based care

· Equitable Care: Ensuring access regardless of geography or circumstance

WHAT THIS MEANS IN PRACTICE

Real-World Impact

Advanced remote patient monitoring programs demonstrate the difference this redefinition makes. One program achieved a 230% increase in guideline-directed medical therapy for heart failure patients, adding an average of 5 years to their lives—but the metric that matters most is that patients remained home, maintained independence, and preserved quality of life while achieving better clinical outcomes[7].

Shared Decision-Making

Patient preferences now matter. Research shows patients are generally unwilling to accept diminished quality of life simply for extended survival[8]. Healthcare providers increasingly recognize that authentic patient partnership—understanding what matters most to each individual—leads to better adherence, satisfaction, and actual outcomes.

THE BOTTOM LINE

The redefinition of medical success from "Did you survive?" to "Are you living well?" represents a maturation of healthcare. It acknowledges that modern medicine can often extend life—the question now is how to ensure that extended life is worth living. This shift places patient values, functional abilities, and personal purpose at the center of clinical decision-making.

Success in 21st-century medicine means helping patients achieve not just survival, but flourishing.

REFERENCES

[1] Takeda Oncology. (2025). Living beyond surviving: Patient-centered approach to modern oncology care. Retrieved from https://www.takedaoncology.com/our-stories/living-is-more-than-surviving/

[2] LaBier, D. (2014). Life purpose beyond survival as a metric of quality healthcare. LinkedIn. Retrieved from https://www.linkedin.com/pulse/20140526192226-11896706--life-purpose-beyond-survival-as-a-metric-of-quality-healthcare/

[3] University of South Carolina. (2025). Patient-reported outcome measures essential to clinical decision-making. Retrieved from https://www.sc.edu/uofsc/posts/2025/10/10-patient-centered-quality-measures.php

[4] Sermo. (2026). 13 strategies to improve patient care quality in 2026. Retrieved from https://www.sermo.com/resources/13-solutions-for-improving-patient-care-and-outcomes-in-2025/

[5] Medisolv. (2024). Trends in healthcare quality and safety to watch in 2024. Retrieved from https://blog.medisolv.com/articles/healthcare-trends-2024/

[6] Cunningham, E., Chief of Virtual Care and Digital Health, Providence Health. (2024). Cadence outcomes report insights. Cadence Care. Retrieved from https://www.cadence.care/post/cadences-2024-outcomes-report-a-new-era-in-primary-care/

[7] Cadence Care. (2024). Cadence's 2024 outcomes report: A new era in primary care. Retrieved from https://www.cadence.care/post/cadences-2024-outcomes-report-a-new-era-in-primary-care/

[8] PubMed Central. (2008). Patient preferences: Survival vs. quality-of-life considerations. Retrieved from https://pubmed.ncbi.nlm.nih.gov/8410398/

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*:first-child]:mt-0"> AI in medicine is best understood as a powerful tool and a conditional partner that can enhance care when tightly supervised by clinicians, but it becomes a problem when used as a replacement, deployed without oversight, or embedded in biased and opaque systems. Whether it functions more as a partner or a problem depends on how health systems design, regulate, and integrate it into real clinical workflows.

Where AI Works Well * Decision support and diagnosis: AI can read imaging, ECGs, and lab patterns with very high accuracy, helping detect cancers, heart disease, and other conditions earlier and reducing some diagnostic errors. * Workflow and documentation: Tools that draft visit notes, summarize records, and route messages can cut administrative burden and free up clinician time for patients. * Patient monitoring and triage: Algorithms can watch vital signs or wearable data to flag deterioration, triage symptoms online, and guide patients through care pathways, which is especially valuable with clinician shortages.

Risks and Problems * Errors, over-reliance, and "automation bias": Studies show clinicians sometimes follow incorrect AI recommendations even when the errors are detectable, which can lead to worse decisions than if AI were not used. * Bias and inequity: If training data underrepresent certain groups, AI can systematically misdiagnose or undertreat them, amplifying existing health disparities. * Trust, explainability, and liability: Black-box systems can undermine shared decision-making when neither doctor nor patient can understand or challenge a recommendation, and they raise hard questions about who is responsible when harm occurs.

Impact on the Doctor–Patient Relationship * Potential partner: By handling routine documentation and data crunching, AI can give clinicians more time for conversation, empathy, and shared decisions, supporting more person-centered care. * Potential barrier: If AI outputs dominate visits or generate long lists of differential diagnoses directly to patients, it can increase anxiety, fragment communication, and weaken relational trust.

How To Keep AI a Partner, Not a Problem * Keep humans in the loop: Use AI as a second reader or coach, not a final decision-maker; clinicians should retain authority to accept, modify, or reject suggestions. * Demand transparency and evaluation: Health systems should validate tools locally, monitor performance across different populations, and disclose AI use to patients in clear language. * Align incentives with patient interests: Regulation, reimbursement, and malpractice rules should reward safe, equitable use of AI—not just speed, volume, or commercial uptake.

In practice, AI in medicine becomes a true partner when it augments human judgment, enhances relationships, and improves outcomes; it becomes a problem when it is opaque, biased, or allowed to replace clinical responsibility.

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Medicine has transitioned due to massive tech adoption (Electronic Health Records EHRs, Artificial Intelligence AI, Telehealth), shifting patient expectations (consumerism, convenience), the rise of value-based care, new treatments (precision medicine), and increased focus on population health and prevention, all while grappling with rising costs, data security, and persistent access/equity gaps, making healthcare more data-driven, personalized, and digitally integrated but also more complex and fragmented. We try to break it down to try and understand the changes and how they might improve the outcomes when going to the doctor. Technological Revolution * Electronic Health Records (EHRs) & Analytics: Widespread EHR adoption (95% of hospitals by 2017) streamlined data, enabling better analytics for management, diagnosis, and care coordination, notes HNI Healthcare and Becker's Hospital Review. * Telehealth & Wearables: Virtual visits, health apps, and fitness trackers (like heart rate monitors) became common, improving access and remote monitoring, says ThriveAP. * Artificial Intelligence (AI) & Machine Learning: AI now analyzes complex data for diagnostics, research, and clinical decisions, says Health Tech Academy and National Institutes of Health (NIH) | (.gov).

Evolving Patient & Provider Landscape * Consumerism: Patients demand convenient, personalized care, challenging traditional models, notes Marathon Health and NEJM Catalyst Innovations in Care Delivery. * New Care Models: Integration (ACOs, hospitalists) aimed at better quality/cost, but challenges in coordination persist, according to the National Institutes of Health (NIH) | (.gov). * Population Health: Greater focus on prevention, chronic disease management (diabetes, obesity), and public health crises (COVID-19), says Health Data Management.

Shifting Medical Focus & Costs * Precision Medicine: Tailored treatments using biomarkers are improving efficacy, notes faCellitate. * Rising Costs: More expensive tech, drugs (like gene therapies), and increased demand contribute to significant spending increases, say National Institutes of Health (NIH) | (.gov) and Springer Publishing Company. * Data & Billing Changes: The shift to complex coding (like ICD-10) improved data but added operational hurdles, say Becker's Hospital Review and National Institutes of Health (NIH) | (.gov) pmc.ncbi.nlm.nih.gov

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This week we discuss stem cells. Having great therapeutic and biotechnological potential, stem cells are extending the frontier in medicine. Not only replace dysfunctional or damaged cells, the so-called regenerative medicine, stem cells may also offer us new perspectives regarding the nature of aging and cancer. This review will cover some basics of stem cells, their current development, and possible applications in medicine. Meanwhile, important remaining challenges of stem cell research are discussed as well.

Stem cells are unique, unspecialized cells that can divide to create more stem cells (self-renewal) and can transform (differentiate) into various specialized cells, acting as the body's repair system to generate new cells for growth, repair, and maintenance, with different types existing in embryos (pluripotent) and adults (multipotent) and being studied for treating diseases like paralysis, diabetes, and heart disease.

Types of Stem Cells

Embryonic Stem Cells: Pluripotent (can become almost any cell type) and come from early embryos.
Adult Stem Cells (Tissue-Specific): Multipotent (limited to certain cell types within their tissue) and found in adult organs like bone marrow, skin, and the brain.
Induced Pluripotent Stem Cells (iPSCs): Adult cells reprogrammed in the lab to act like embryonic stem cells, offering a path to personalized medicine.

Sources of Stem Cells

Embryos (for research),
Umbilical cord blood,
Bone marrow,
Other adult tissues (like fat or skin).

Medical Significance (Stem Cell Therapy)

Regenerative Medicine: Uses stem cells to repair or replace damaged tissues and organs.
Treatments: Already used to treat blood cancers (like leukemia) through bone marrow transplants.
Research Focus: Investigated for treating conditions such as spinal cord injuries, Parkinson's, Alzheimer's, heart disease, and diabetes.

There is some stem cell controversy, primarily centering on the ethics of using human embryos, particularly embryonic stem cells, which hold vast potential for medicine but require destroying the embryo, raising moral debates about the embryo's status as human life, with opponents seeing it as the destruction of life and proponents viewing it as a moral imperative to cure disease, though adult stem cell research and induced pluripotent stem cells (iPSCs) offer less controversial avenues. We don't discuss this aspect of the therapeutic use but if you are interested you can find out more with a simple internet search.

Stem cell therapy in the US is not banned but restricted. Only FDA-approved products (such as cord blood transplants and CAR-T cell therapies for blood conditions) are fully legal. Other uses are allowed only in limited cases under the 361 HCT/P pathway.

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This week we will discuss the topic of "functional fitness" With the new year upon us many people want to add fitness or getting healthy as goals and we are here to help! Functional fitness is a simple, effective way to keep your body moving and reduce restlessness. It focuses on exercises that help you perform everyday activities more easily and safely—like getting up off the floor, carrying groceries, or reaching for items on a shelf.

By training your muscles to work the way you actually use them in daily life, functional fitness reduces injury risk and improves overall quality of life. It helps you move through your day with more confidence, strength, and ease.

Fitness expert Brad Schoenfeld describes functional fitness as existing "on a continuum." In other words, almost any exercise can be functional if it improves your ability to move well in real life. While general strength training is beneficial, exercises that mimic everyday movements tend to offer the greatest payoff.

Functional fitness also improves balance, endurance, and flexibility—benefits that matter at every age.

Below are 13 functional exercises suitable for adults of all ages. Choose five or six and perform them three to four times per week. All can be done safely at home with minimal equipment.

Squat Squats mimic sitting and standing from a chair, making them one of the most important functional movements. Move slowly and with control. To modify, reduce depth or use a chair for support.
Incline Chest Press This exercise strengthens the muscles used to push yourself up from the floor or a surface. It's a gentler alternative to pushups and works the same muscle groups.
Plank Planks build core strength, balance, and mobility—skills needed for getting up and down from the floor. Focus on maintaining good form rather than duration.
Wall Squat Wall squats provide added support and reduce strain on the lower back while still strengthening the legs.
Step-Down This movement improves balance and stability and mimics stepping down from stairs or high surfaces.
Row Rows strengthen the back and arms, helping with tasks like lifting objects from shelves or pulling items toward you.
Stationary Lunge Lunges replicate the motion of standing up from the ground and improve leg strength and joint mobility.
Step-Up Step-ups strengthen the muscles used for climbing stairs and stepping onto raised surfaces.
Single-Leg Lift Single-leg exercises improve balance and core stability, which helps prevent falls.
Side Plank Side planks target the oblique muscles and support overall core strength.
Downward-Facing Dog This yoga pose builds strength, flexibility, and balance while supporting your body weight.
Single-Leg Deadlift Deadlifts train the hip hinge and strengthen multiple leg muscles, preparing you for lifting objects safely.
Lunge with Bent-Over Row This combined movement challenges balance while strengthening both the lower and upper body.

Takeaway Functional fitness prepares your body for real-life movement. It emphasizes performance over appearance, uses minimal equipment, and carries a lower risk of injury than high-intensity training styles.

Because it focuses on practical strength and movement quality—not muscle size—it's accessible, effective, and appropriate for people of all ages and fitness levels. If you have existing injuries or medical conditions, consult a healthcare provider before starting.

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By the end of the first week of the new year, nearly 77% of New Year's resolutions have already failed (Norcross, 1988). That's discouraging—but it doesn't mean you should stop trying.

It means most of us are setting resolutions in ways that don't work.

You aren't weak or lazy. More often, the problem is a misaligned system—one that relies too heavily on willpower and short-lived motivation. Motivation naturally fades over time, even when our intentions are good.

Think about how often you enthusiastically agree to plans weeks in advance, only to feel tired or unmotivated when the day arrives. Or how many times you've started a project—cleaning a room, taking a course, planning a trip—only to watch your early excitement slowly disappear. We're excellent at strong intentions; follow-through is harder.

The good news? Not all resolutions fail. That same research found that 19% of resolutions are still maintained two years later (Norcross, 1988). We just don't spend enough time learning from what does work.

Three DON'Ts 1. Don't make life-changing, all-or-nothing resolutions Resolutions that try to overhaul everything at once are overwhelming and fragile.

Examples:

"New year, new me—I'll reinvent my career, relationships, and lifestyle."
"I'll work out every single day this year."
"I'll triple my income or eliminate all my debt."

Why this fails: One setback can feel like total failure, making it easy to quit entirely.

Don't set shame-driven goals Goals rooted in self-criticism, embarrassment, or self-loathing undermine motivation.

Examples:

"I need to get my life together."
"I have to lose weight so I don't look bad."
"This year I'll stop being lazy."

Why this fails: Shame erodes self-belief and increases anxiety, making lasting change harder—not easier.

Don't set vague resolutions Unclear goals are difficult to act on.

Examples:

"I want to be healthier."
"I'll work on myself."
"I need better boundaries."

Why this fails: Without clear actions or markers of success, procrastination takes over and goals fade.

Three DOs Meaning Choose one small, consistent practice that reflects what truly matters to you.

Examples:

"Every Sunday evening, I'll spend an hour writing, painting, or making music."
"Once a week, I'll take a phone-free walk to reflect."

Purpose Connect your resolution to generativity—contributing beyond yourself (Erikson, 1950).

Examples:

"I'll volunteer or mentor through an organization like SCORE or Rotary."

Connection Create simple, recurring rituals with others.

Example:

"I'll schedule a weekly call, walk, or shared meal and treat it as a real commitment."

Traditional New Year's resolutions don't fail because people lack discipline. They fail because they're poorly designed—too big, too vague, or rooted in shame.

When resolutions focus on "fixing what's wrong," they often lead to self-criticism once early motivation fades. In contrast, resolutions grounded in meaning, purpose, and connection are more sustainable.

If you're among the 77% whose resolution didn't stick, don't fall into the shame trap. A broken resolution isn't failure—it's feedback. Reset your expectations, adjust your strategy, and start again with something manageable.

Move away from punishment and toward practices that bring joy, meaning, and connection. That shift alone can make the difference between another abandoned resolution and one that truly lasts.

May your year be filled with meaning, purpose, and connections that sustain you.

(CREDITS: PSYCHOLOGY TODAY)

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The lymphatic system, or lymphoid system, is one of the components of the circulatory system, and it serves a critical role in both immune function and surplus extracellular fluid drainage. Components of the lymphatic system include lymph, lymphatic vessels and plexuses, lymph nodes, lymphatic cells, and a variety of lymphoid organs. The pattern and form of lymphatic channels are more variable and complex but generally parallel those of the peripheral vascular system. The lymphatic system partly functions to convey lymphatic fluid, or lymph, through a network of lymphatic channels, filter lymphatic fluid through lymph nodes and return lymphatic fluid to the bloodstream, where it is eventually eliminated. Nearly all body organs, regions, and systems have lymphatic channels to collect the various byproducts that require elimination . Liver and intestinal lymphatics produce about 80% of the volume of lymph in the body.

Notable territories of the body that do not appear to contain lymphatics include the bone marrow, epidermis, as well as other tissues where blood vessels are absent. The central nervous system was long considered to be absent of lymphatic vessels until they were recently identified in the cranial meninges. Moreover, a vessel appearing to have lymphatic features was also discovered in the eye. The lymphatic system is critical in a clinical context, particularly given that it is a major route for cancer metastasis and that the inflammation of lymphatic vessels and lymph nodes is an indicator of pathology.

Structure

The lymphatic system includes numerous structural components, including lymphatic capillaries, afferent lymphatic vessels, lymph nodes, efferent lymphatic vessels, and various lymphoid organs.

Lymphatic capillaries are tiny, thin-walled vessels that originate blindly within the extracellular space of various tissues. Lymphatic capillaries tend to be larger in diameter than blood capillaries and are interspersed among them to enhance their ability to collect interstitial fluid efficiently. They are critical in the drainage of extracellular fluid and allow this fluid to enter the closed capillaries but not exit due to their unique morphology. Lymphatic capillaries at their blind ends are composed of a thin endothelium without a basement membrane. The endothelial cells at the closed end of the capillary overlap but shift to open the capillary end when interstitial fluid pressure is greater than intra-capillary pressure. This process permits lymphocytes, interstitial fluid, bacteria, cellular debris, plasma proteins, and other cells to enter the lymphatic capillaries. Special lymphatic capillaries called lacteals exist in the small intestine to contribute to the absorption of dietary fats. Lymphatics in the liver contribute to a specialized role in transporting hepatic proteins into the bloodstream. The lymphatic capillaries of the body form large networks of channels called lymphatic plexuses and converge to form larger lymphatic vessels.

Lymphatic vessels convey lymph, or lymphatic fluid, through their channels. Afferent (toward) lymphatic vessels convey unfiltered lymphatic fluid from the body tissues to the lymph nodes, and efferent (away) lymphatic vessels convey filtered lymphatic fluid from lymph nodes to subsequent lymph nodes or into the venous system. The various efferent lymphatic vessels in the body eventually converge to form two major lymphatic channels: the right lymphatic duct and the thoracic duct.

The right lymphatic duct drains most of the right upper quadrant of the body, including the right upper trunk, right upper extremity, and right head and neck. The right lymphatic trunk is a visible channel in the right cervical region just anterior to the anterior scalene muscle. Its origin and termination are variable in morphology, typically forming as the convergence of the right bronchomediastinal, jugular, and subclavian trunks, extending 1 to 2 centimeters in length before returning its contents to the systemic circulation at the junction of the right internal jugular, subclavian, and/or brachiocephalic veins.

The thoracic duct, also known as the left lymphatic duct or van Hoorne's canal, is the largest of the body's lymphatic channels. It drains most of the body except for the territory of the right superior thorax, head, neck, and upper extremity served by the right lymphatic duct. The thoracic duct is a thin-walled tubular vessel measuring 2 to 6 mm in diameter. The length of the duct ranges from 36 to 45 cm. The thoracic duct is highly variable in form but typically arises in the abdomen at the superior aspect of the cisterna chyli, around the level of the twelfth thoracic vertebra (T12). The cisterna chyli, from which it extends, is an expanded lymphatic sac that forms at the convergence of the intestinal and lumbar lymphatic trunks extending along the L1-L2 vertebral levels. The cisterna chyli is present in approximately 40-60% of the population, and in its absence, the intestinal and lumbar lymphatic trunks communicate directly with the thoracic duct at the T12 level.

As a result, the thoracic duct receives lymphatic fluid from the lumbar lymphatic trunks and chyle, composed of lymphatic fluid and emulsified fats, from the intestinal lymphatic trunk. Initially, the thoracic duct is located just to the right of the midline and posterior to the aorta. It exits the abdomen and enters the thorax via the aortic hiatus formed by the right and left crura of the diaphragm, side by side with the aorta. The thoracic duct then ascends in the thoracic cavity just anterior and to the right of the vertebral column between the aorta and azygos vein. At about the level of the fifth thoracic vertebra (T5), the thoracic duct typically crosses to the left of the vertebral column and posterior to the esophagus. From here, it ascends vertically and usually empties its contents into the junction of the left subclavian and left internal jugular veins in the cervical region.

To ensure that lymph does not flow backward, collecting lymphatic vessels and larger lymphatic vessels have one-way valves. These valves are not present in the lymphatic capillaries. These lymphatic valves permit the continued advancement of lymph through the lymphatic vessels aided by a pressure gradient created by vascular smooth muscle, skeletal muscle contraction, and respiratory movements. However, it is important to note that lymphatic vessels also communicate with the venous system through various anastomoses.

Lymph nodes are small bean-shaped tissues situated along lymphatic vessels. Lymph nodes receive lymphatic fluid from afferent lymphatic vessels and convey lymph away through efferent lymphatic vessels. Lymph nodes serve as a filter and function to monitor lymphatic fluid/blood composition, drain excess tissue fluid and leaked plasma proteins, engulf pathogens, augment an immune response, and eradicate infection.

Several organs in the body are considered to be lymphoid or lymphatic organs, given their role in the production of lymphocytes. These include the bone marrow, spleen, thymus, tonsils, lymph nodes, and other tissues. Lymphoid organs can be categorized as primary or secondary lymphoid organs. Primary lymphoid organs are those that produce lymphocytes, such as the bone marrow and thymus. Bone marrow is the primary site for the production of lymphocytes. The thymus is a glandular organ located anterior to the pericardium. It serves to mature and develop T cells, or thymus cell lymphocytes, in response to an inflammatory process or pathology. As individuals age, both their bone marrow and thymus reduce and accumulate fat. Secondary lymphoid organs serve as territories in which immune cells function and include the spleen, tonsils, lymph nodes, and various mucous membranes, such as in the intestines. The spleen is a purplish, fist-sized organ in the left upper abdominal quadrant that contributes to immune function by serving as a blood filter, storing lymphocytes within its white pulp, and being a site for an adaptive immune response to antigens. The lingual tonsils, palatine tonsils, and pharyngeal tonsils, or adenoids, work to prevent pathogens from entering the body. Mucous membranes in the gastrointestinal, respiratory, and genitourinary systems also function to prevent pathogens from entering the body.

Lymph

Lymphatic fluid, or lymph, is similar to blood plasma and tends to be watery, transparent, and yellowish in appearance. Extracellular fluid leaks out of the blood capillary walls because of pressure exerted by the heart or osmotic pressure at the cellular level. As the interstitial fluid accumulates, it is picked up by the tiny lymphatic capillaries along with other substances to form lymph. This fluid then passes through the lymphatic vessels and lymph nodes and finally enters the venous circulation. As the lymph passes through the lymph nodes, both monocytes and lymphocytes enter it.

Lymph is composed primarily of interstitial fluid with variable amounts of lymphocytes, bacteria, cellular debris, plasma proteins, and other cells. In the GI tract, lymphatic fluid is called chyle and has a milk-like appearance that is chiefly due to the presence of cholesterol, glycerol, fatty acids, and other fat products. The vessels that transport the lymphatic fluid from the GI tract are known as lacteals.

Embryology

The development of the lymphatic system is known from both human and animal, especially mouse studies. The lymphatic vessels form after the development of blood vessels, around six weeks post-fertilization. The endothelial cells that serve as precursors to the lymphatics arise from the embryonic cardinal veins. The process by which lymphatic vessels form is similar to that of the blood vessels and produces lymphatic-venous and intra-lymphatic anastomoses, but diverse origins exist for components of lymphatic vessel formation in different regions.

Six primary lymph sacs develop and are apparent about eight weeks post-fertilization. These include, from caudal to cranial, one cisterna chyli, one retroperitoneal lymph sac, two iliac lymph sacs, and two jugular lymph sacs. The jugular lymph sacs are the first to develop, initially appearing next to the jugular part of the cardinal vein. Lymphatic vessels then form adjacent to the blood vessels and connect the various lymph sacs. The lymphatic vessels primarily arise from the lymph sacs through the process of self-proliferation and polarized sprouting.

Stem/progenitor cells play a huge role in forming lymphatic tissues and vessels by contributing to sustained growth and postnatally differentiating into lymphatic endothelial cells. Lymphatic channels from the developing gut connect with the retroperitoneal lymph sac and the cisterna chyli, situated just posteriorly. The lymphatic channels of the lower extremities and inferior trunk communicate with the iliac lymph sacs. Finally, lymphatic channels in the head, neck and upper extremities drain to the jugular lymph sacs. Additionally, a right and left thoracic duct form and connect the cisterna chyli with the jugular lymph sacs and form anastomoses that eventually produce the typical adult form. The lymph sacs then produce groups of lymph nodes in the fetal period. Migrating mesenchyme enters the lymph sacs and produces lymphatic networks, connective tissue, and other layers of the lymph nodes.

Function The lymphatic system's primary function is to balance the volume of interstitial fluid and convey it and excess protein molecules into the venous circulation. The lymphatic system is also important in immune surveillance, defending the body against foreign particles and microorganisms. It does so by conveying antigens and leukocytes to lymph nodes, where antigen-primed and targeted lymphocytes and other immune cells are conveyed into the lymphatic vessels and blood vessels. In addition, the system has a role in the absorption of fat-soluble vitamins and fatty substances in the gut via the gastrointestinal tract's lacteals within the villi and the transport of this material into the venous circulation.

Newly recognized lymphatic vessels are visible in the meninges relating to cerebrospinal fluid (CSF) outflow from the central nervous system. Finally, lymphatics may play a role in the clearance of ocular fluid via the lymphatic-like Schlemm canals.

Clinical Significance Leaks of lymphatic fluid occur when the lymphatic vessels are damaged. In the abdomen, lymphatic vessel damage may occur during surgery, especially during retroperitoneal procedures such as repairing an abdominal aortic aneurysm. These leaks tend to be mild, and the vessels in the peritoneum and mesentery eventually absorb the lymphatic fluid or chyle. However, when the thoracic duct is injured in the chest, the chyle leak can be extensive. In most cases, conservative care with a no-fat diet (medium chain triglycerides) or total parenteral nutrition is unsuccessful. In most cases, if the injury to the thoracic duct was surgical, a surgical procedure is required to tie off the duct. If the thoracic duct is injured in the cervical region, then inserting a drainage tube and adopting a low-fat diet will help seal the leak. However, thoracic duct injury in the chest cavity usually requires drainage and surgery. It is rare for the thoracic segment of the thoracic duct to seal on its own.

In terms of accumulation of chyle in the thorax (i.e., chylothorax), if a patient has an injury to the thoracic duct in the thorax below the T5 vertebral level, then fluid will collect in only the right pleural cavity. If the injury is to the thoracic duct in the thorax above the T5 vertebral level, then fluid will appear in both pleural cavities.

Other Issues The lymphatic system is prone to disorders like the venous and arterial circulatory systems. Developmental or functional defects of the lymphatic system cause lymphedema. When this occurs, the lymphatic system is unable to sufficiently drain lymphatic fluid resulting in its accumulation and swelling of the territory. Lymphedema, this swelling due to the accumulation of lymph, is classified as primary or secondary.

Primary lymphedema is an inherited disorder where the lymphatic system development has been disrupted, causing absent or malformed lymphatic tissues. This condition often presents soon after birth, but some conditions may present later in life (e.g., at puberty or later adulthood). There are no effective treatments for primary lymphedema. Past surgical treatments were found to be mutilating and are no longer implemented. The present-day treatment revolves around compression stockings, pumps, and constrictive garments.

Secondary lymphedema is an acquired disorder involving lymphatic system dysfunction that may...

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This week we are talking about Pancreatic cancer. This is a type of cancer that begins as a growth of cells in the pancreas. The pancreas lies behind the lower part of the stomach. It makes enzymes that help digest food and hormones that help manage blood sugar.

The most common type of pancreatic cancer is pancreatic ductal adenocarcinoma. This type begins in the cells that line the ducts that carry digestive enzymes out of the pancreas.

Pancreatic cancer rarely is found at its early stages when the chance of curing it is greatest. This is because it often doesn't cause symptoms until after it has spread to other organs.

Your health care team considers the extent of your pancreatic cancer when creating your treatment plan. Treatment options may include surgery, chemotherapy, radiation therapy or a mix of these.

Pancreatic cancer often doesn't cause symptoms until the disease is advanced. When they happen, signs and symptoms of pancreatic cancer may include:

Belly pain that spreads to the sides or back.
Loss of appetite.
Weight loss.
Yellowing of the skin and the whites of the eyes, called jaundice.
Light-colored or floating stools.
Dark-colored urine.
Itching.
New diagnosis of diabetes or diabetes that's getting harder to control.
Pain and swelling in an arm or leg, which might be caused by a blood clot.
Tiredness or weakness.

It's not clear what causes pancreatic cancer. Doctors have found some factors that might raise the risk of this type of cancer. These include smoking and having a family history of pancreatic cancer.

Understanding the pancreas The pancreas is about 6 inches (15 centimeters) long and looks something like a pear lying on its side. It releases hormones, including insulin. These hormones help the body process the sugar in the foods you eat. The pancreas also makes digestive juices to help the body digest food and take in nutrients.

How pancreatic cancer forms Pancreatic cancer happens when cells in the pancreas develop changes in their DNA. A cell's DNA holds the instructions that tell a cell what to do. In healthy cells, the instructions tell the cells to grow and multiply at a set rate. The cells die at a set time. In cancer cells, the changes give different instructions. The changes tell the cancer cells to make many more cells quickly. Cancer cells can keep living when healthy cells would die. This causes there to be too many cells.

The cancer cells might form a mass called a tumor. The tumor can grow to invade and destroy healthy body tissue. In time, cancer cells can break away and spread to other parts of the body.

Most pancreatic cancer begins in the cells that line the ducts of the pancreas. This type of cancer is called pancreatic ductal adenocarcinoma or pancreatic exocrine cancer. Less often, cancer can form in the hormone-producing cells or the neuroendocrine cells of the pancreas. These types of cancer are called pancreatic neuroendocrine tumors or pancreatic endocrine cancer.

Risk factors Factors that might raise the risk of pancreatic cancer include:

Smoking.
Type 2 diabetes.
Chronic inflammation of the pancreas, called pancreatitis.
Family history of DNA changes that can increase cancer risk. These include changes in the BRCA2 gene, Lynch syndrome and familial atypical multiple mole melanoma (FAMMM) syndrome.
Family history of pancreatic cancer.
Obesity.
Older age. Most people with pancreatic cancer are over 65.
Drinking a lot of alcohol.

As pancreatic cancer progresses, it can cause complications such as:

Weight loss. People with pancreatic cancer might lose weight as the cancer uses more of the body's energy. Nausea and vomiting caused by cancer treatments or a cancer pressing on the stomach might make it hard to eat. Sometimes the body has trouble getting nutrients from food because the pancreas isn't making enough digestive juices.
Jaundice. Pancreatic cancer that blocks the liver's bile duct can cause jaundice. Signs include yellowing of the skin and the whites of the eyes. Jaundice can cause dark-colored urine and pale-colored stools. Jaundice often occurs without belly pain.

If the bile duct is blocked, a plastic or metal tube called a stent can be put inside it. The stent helps hold the bile duct open. This is done using a procedure called endoscopic retrograde cholangiopancreatography, also called ERCP.

During ERCP, a health care professional puts a long tube with a tiny camera, called an endoscope, down the throat. The tube goes through the stomach and into the upper part of the small intestine. The health professional puts a dye into the pancreatic ducts and bile ducts through a small tube that fits through the endoscope. The dye helps the ducts show up on imaging tests. The health professional uses those images to place a stent at the right spot in the duct to help hold it open. * Pain. A growing tumor may press on nerves in your abdomen, causing pain that can become severe. Pain medications can help you feel more comfortable. Treatments, such as radiation and chemotherapy, might help slow tumor growth and provide some pain relief.

When medicines aren't helping, a health care professional might suggest a celiac plexus block. This procedure uses a needle to put alcohol into the nerves that control pain in the belly. The alcohol stops the nerves from sending pain signals to the brain. * Bowel blockage. Pancreatic cancer can grow into or press on the first part of the small intestine, called the duodenum. This can block the flow of digested food from the stomach into the intestines.

A health care professional might suggest putting a tube called a stent in the small intestine to hold it open. Sometimes, it might help to have surgery to place a feeding tube. Or surgery can attach the stomach to a lower part of the intestines where the cancer isn't causing a blockage.

Prevention Screening for people with a high risk of pancreatic cancer Screening uses tests to look for signs of pancreatic cancer in people who don't have symptoms. It might be an option if you have a very high risk of pancreatic cancer. Your risk might be high if you have a strong family history of pancreatic cancer or if you have an inherited DNA change that increases the risk of cancer.

Pancreatic cancer screening might involve imaging tests, such as MRI and ultrasound. These tests are generally repeated every year.

The goal of screening is to find pancreatic cancer when it's small and most likely to be cured. Research is ongoing, so it's not yet clear whether screening can lower the risk of dying of pancreatic cancer. There are risks to screening. This includes the chance of finding something that requires surgery but later turns out to not be cancer.

Talk about the benefits and risks of pancreatic cancer screening with your health care team. Together you can decide whether screening is right for you.

Genetic testing for cancer risk If you have a family history of pancreatic cancer, discuss it with a health care professional. The health professional can review your family history and help you understand whether genetic testing might be right for you.

Genetic testing can find DNA changes that run in families and increase the risk of cancer. If you're interested in genetic testing, you might be referred to a genetic counselor or other health care professional trained in genetics.

Ways to lower risk You might reduce your risk of pancreatic cancer if you:

Stop smoking. If you smoke, talk to a member of your health care team about ways to help you stop. These might include support groups, medicines and nicotine replacement therapy.
Maintain a healthy weight. If you are at a healthy weight, work to maintain it. If you need to lose weight, aim for a slow, steady weight loss of 1 to 2 pounds (0.5 to 1 kilogram) a week. To help you lose weight, exercise most days of the week. Slowly increase the amount of exercise you get. Choose a diet rich in vegetables, fruit and whole grains with smaller portions. (CREDITS: MAYO CLINIC)

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This week we discuss diabetes mellitus, a group of diseases that affect how the body uses blood sugar (glucose). Glucose is an important source of energy for the cells that make up the muscles and tissues. It's also the brain's main source of fuel.

The main cause of diabetes varies by type. But no matter what type of diabetes you have, it can lead to excess sugar in the blood. Too much sugar in the blood can lead to serious health problems.

Chronic diabetes conditions include type 1 diabetes and type 2 diabetes. Potentially reversible diabetes conditions include prediabetes and gestational diabetes. Prediabetes happens when blood sugar levels are higher than normal. But the blood sugar levels aren't high enough to be called diabetes. And prediabetes can lead to diabetes unless steps are taken to prevent it. Gestational diabetes happens during pregnancy. But it may go away after the baby is born.

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Mast cell activation syndrome (MCAS) is when you have unexplained episodes of severe symptoms like swelling, diarrhea, vomiting, flushing and itching. Unlike allergies that happen with a specific exposure, MCAS episodes happen without a clear trigger.

In some cases, mast cell activation can cause anaphylaxis, a severe allergic condition that can be life-threatening. It can cause you to have trouble breathing and drop your blood pressure to dangerously low levels. Call 911 (or your local emergency service number) or go to the nearest emergency room if you're experiencing severe anaphylaxis.

Mast cells are a type of immune cell responsible for immune reactions. For instance, conditions like allergic rhinitis and asthma, allergic reactions (like anaphylaxis to drugs or food) and mastocytosis all activate mast cells. This causes them to release proteins that give you symptoms that are bothersome at best, and dangerous at worst.

Other common conditions can also cause unexplained symptoms. It's important to discuss your concerns with your provider. They'll make sure you get a complete workup with a specialist, like an allergist. An allergist is a type of doctor who can diagnose and manage many types of allergic conditions.

But mast cell activation syndrome is rare. Healthcare providers diagnose mast cell activation syndrome if:

You have repeated symptoms of possible anaphylaxis without a clear trigger
You have more than one body system affected at the same time
Tests show signs of mast cell activation
Mast cell medications provide relief from your symptoms

(CREDITS: Cleveland Clinic)

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Lung cancer is the third most common cancer in the U.S. It's caused by harmful cells in your lungs growing unchecked. Treatments include surgery, chemotherapy, immunotherapy, radiation and targeted drugs. Screening is recommended if you're at high risk. Advances in treatments have caused a significant decline in lung cancer deaths in recent years.

Lung cancer is a disease caused by uncontrolled cell division in your lungs. Your cells divide and make more copies of themselves as a part of their normal function. But sometimes, they get changes (mutations) that cause them to keep making more of themselves when they shouldn't. Damaged cells dividing uncontrollably create masses, or tumors, of tissue that eventually keep your organs from working properly.

Lung cancer is the name for cancers that start in your lungs — usually in the airways (bronchi or bronchioles) or small air sacs (alveoli). Cancers that start in other places and move to your lungs are usually named for where they start (your healthcare provider may refer to this as cancer that's metastatic to your lungs).

There are many cancers that affect the lungs, but we usually use the term "lung cancer" for two main kinds: non-small cell lung cancer and small cell lung cancer. Other types of cancer can start in or around your lungs, including lymphomas (cancer in your lymph nodes), sarcomas (cancer in your bones or soft tissue) and pleural mesothelioma (cancer in the lining of your lungs). These are treated differently and usually aren't referred to as lung cancer. (CREDITS: Cleveland Clinic)

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Did you know that about half of all eye injuries happen right at home?

Home activities that can injure your eyes include:

Cleaning. Chemicals like bleach in household cleaning products cause 125,000 eye injuries each year.
Home Improvement. Screws, nails and hand tools can launch into the air—and into your eyes.
Power tools can also send wood chips or other substances flying into the air.
Yard Work. Lawn mowers, trimmers and even shovels can throw dirt and debris into the air. Branches, twigs and thorns can also be dangerous.

Unfortunately, only about three out of 10 people wear protective eyewear during home projects that could hurt their eyes. The good news? Simply wearing protective eyewear can reduce your risk for eye injury by 90 percent!

The American Academy of Ophthalmology urges every household to have at least one pair of ANSI-approved protective eyewear. ("ANSI-approved" means the protective eyewear is made to meet safety standards of the American National Standards Institute.)

In the house
- Using dangerous chemicals such as oven cleaner and bleach (accidents involving common household products cause 125,000 eye injuries each year). Read the labels of chemicals and cleaners carefully, and don't mix products.
- Cooking foods can that can splatter hot grease or oil. Use grease shields on frying pans to protect yourself from splattering.
- Opening champagne bottles during a celebration. Wrap a towel or cloth around the top of the bottle while unscrewing it to "catch" the cork. Never point a champagne bottle towards another person or yourself when opening it.
- Drilling or hammering screws or nails into walls or hard surfaces like brick or cement. The screws or nails can fly into the air, or fragments can come off the surface.
- Using hot objects such as curling irons around your face. Contact with your eyes can cause serious injury.
- Loose rugs and railings or other hazards that could cause falls or slips. Secure rugs with a non-slip pad underneath. Check to make sure railings are secure and not loose.
- Put padding on sharp corners and edges if you have children or the elderly in your house.
In the yard
- Mowing the lawn. Check the lawn or the outdoor area first for sticks, rocks or other items that can fly out from under the mower.
- Using a power trimmer or edger.
- Clipping hedges and bushes.
- Playing sports.
In the garage or workshop
- Using power or hand tools. Keep your tools in good condition; damaged tools should be repaired or replaced.
- Working with solvents or other chemicals. Make sure that all spray nozzles are directed away from you.
- Doing anything that can cause fragments or dust particles to fly around in the air.
- Tying down equipment or loads with bungee cords. Bungee cords are a serious danger to eyes when they snap back.

For all of these activities, remember that people nearby also face serious risk. Bystanders should wear eye protection too or leave the area where the chore is being done. This is particularly important for children who watch their parents do chores in and around the home. (CREDITS: American Academy of Ophthalmology)

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This week we discuss changing the outcome of your health with nutrition & exercise. Our guest today is Dr. James Thompson, the author of Fearless Wellness and a passionate advocate for transformational change. He completed medical training 35 years ago and has dedicated my career to empowering others to live healthier, more fulfilling lives.

He experienced a life-changing event in 2012 and participated in a 21-day Daniel Fast with my church community. Though the three-week diet, equivalent to a whole food plant-based diet, was intended to emphasize prayer, the impact of the food intrigued him. By the end of the second week, he had more energy, fewer joint aches, more mental clarity, better sleep, and lower blood pressure. He surmised the benefits were mainly from consuming real food and omitting processed food.

He decided to take a year-long certification course in integrative holistic nutrition which was the start of his transformation to a whole food plant-based lifestyle.

His training course, combined with a decade of studying nutrition science, love of animals, and concerns about climate change, has led me to the current space where he resides, a vegan.

Here is the basic outline & links to his Blog and his new book : "FEARLESS Wellness: Transform Your Life, One Step at a Time"

F – Food: Embrace plant-based eating E – Exercise: Stay active regularly A – Avoid toxins: Eliminate harmful habits (e.g., tobacco) R – Restorative sleep: Prioritize quality rest L – Lessen stress: Manage and reduce daily pressures E – Engage your mind: Stimulate mental growth S – Social energy: Cultivate empathy and connections S – Spiritual connectivity: Foster a sense of purpose and belonging

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This week we discuss the dangers of impaired driving.

Impaired driving poses significant dangers, leading to thousands of fatalities and injuries each year due to reduced coordination, judgment, and reaction times.

Definition and Causes Impaired driving occurs when an individual operates a vehicle while under the influence of substances such as alcohol, marijuana, prescription drugs, or illicit drugs. These substances can severely impair essential driving skills, including visual function, mental judgment, and motor skills.

Statistics * Alcohol-Related Fatalities: In the United States, approximately 29 people die daily in crashes involving alcohol-impaired drivers, accounting for about 30% of all traffic-related deaths. * Drug Impairment: A significant number of drivers involved in serious crashes test positive for drugs. In a study, 51.6% of drivers involved in serious injury and fatal crashes had at least one drug in their system prior to the incident.

Effects of Impairment 1. Alcohol: Even a single drink can impair driving abilities, leading to decreased reaction times and poor decision-making. The legal blood alcohol concentration (BAC) limit is typically set at 0.08%, but impairment can begin at lower levels. 2. Drugs: Both legal and illegal drugs can impair driving. For instance, marijuana can affect coordination and judgment, while stimulants like cocaine can lead to aggressive driving behaviors. 3. Medications: Some prescription and over-the-counter medications can cause drowsiness and dizziness, further increasing the risk of accidents.

Preventive Measures * Education and Awareness: Public campaigns aimed at educating drivers about the dangers of impaired driving are crucial. Understanding the effects of substances on driving can help reduce incidents. * Designated Drivers: Encouraging the use of designated drivers, taxis, or rideshare services can significantly reduce the risk of impaired driving. * Legal Enforcement: Strict enforcement of DUI laws and sobriety checkpoints can deter impaired driving behaviors.

Conclusion Impaired driving is a serious public safety issue that leads to numerous preventable deaths and injuries each year. By understanding the dangers and implementing effective preventive measures, we can work towards reducing the incidence of impaired driving and ensuring safer roads for everyone.

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Falls are a threat to the health of older adults and can reduce their ability to remain independent. However, falls don't have to be inevitable as you age. You can reduce your chance of falling or help a loved one prevent falls. There are proven ways to reduce and prevent falls, even for older adults. We identify older adults as anyone 65 years and older.

Physical changes and health conditions — and sometimes the medications used to treat those conditions — make falls more likely as you age. In fact, falls are a leading cause of injury among older adults. Still, fear of falling doesn't need to rule your life. Instead, consider six simple fall prevention strategies.

1. Make an appointment with your health care provider

Start by making an appointment with your health care provider. To assess your risk and discuss fall prevention strategies, your health care provider may want to talk about the following:

Your medications. Make a list of your prescription and nonprescription medications and supplements, or bring them with you to the appointment. Your health care provider can review your medications for side effects and interactions that may increase your risk of falling. To help with fall prevention, your health care provider may consider weaning you off medications that make you tired or affect your thinking, such as sedatives, antihistamines and some types of antidepressants.
Any previous falls. Write down the details, including when, where and how you fell. Be prepared to discuss instances when you almost fell but were caught by someone or managed to grab hold of something just in time. Details such as these may help your health care provider identify specific fall prevention strategies.
Your health conditions. Certain eye and ear disorders may increase your risk of falls. Be prepared to discuss your health conditions and how comfortable you are when you walk — for example, do you feel any dizziness, joint pain, shortness of breath, or numbness in your feet and legs when you walk? Your health care provider may evaluate your muscle strength, balance and walking style (gait) as well.

2. Keep moving

Physical activity can go a long way toward fall prevention. With your health care provider's OK, consider activities such as walking, water workouts or tai chi — a gentle exercise that involves slow and graceful dance-like movements. These activities reduce the risk of falls by improving strength, balance, coordination and flexibility.

If you avoid physical activity because you're afraid it will make a fall more likely, tell your health care provider. Your provider may recommend carefully monitored exercise programs or refer you to a physical therapist. The physical therapist can create a custom exercise program aimed at improving your balance, flexibility and muscle strength.

3. Wear sensible shoes

Consider changing your footwear as part of your fall prevention plan. High heels, floppy slippers and shoes with slick soles can make you slip, stumble and fall. So can walking in your stocking feet. Instead, wear properly fitting, sturdy, flat shoes with nonskid soles. Sensible shoes may also reduce joint pain.

4. Remove home hazards

Take a look around your home for potential fall hazards. To make your home safer:

Remove boxes, newspapers, electrical cords and phone cords from walkways.
Move coffee tables, magazine racks and plant stands from high-traffic areas.
Secure loose rugs with double-faced tape, tacks or a slip-resistant backing — or remove loose rugs from your home.
Repair loose, wooden floorboards and carpeting right away.
Store clothing, dishes, food and other necessities within easy reach.
Immediately clean spilled liquids, grease or food.
Use nonslip mats in your bathtub or shower. Use a bath seat, which allows you to sit while showering.

5. Light up your living space

Keep your home brightly lit to avoid tripping on objects that are hard to see. Also:

Place night lights in your bedroom, bathroom and hallways.
Place a lamp within reach of your bed in case you need to get up in the middle of the night.
Make clear paths to light switches that aren't near room entrances. Consider trading traditional switches for glow-in-the-dark or illuminated switches.
Turn on the lights before going up or down stairs.
Store flashlights in easy-to-find places in case of power outages.

6. Use assistive devices

Your health care provider might recommend using a cane or walker to keep you steady. Other assistive devices can help, too. For example:

Handrails for both sides of stairways
Nonslip treads for bare-wood steps
A raised toilet seat or one with armrests
Grab bars for the shower or tub
A sturdy plastic seat for the shower or tub — plus a hand-held shower nozzle for bathing while sitting down

If necessary, ask your health care provider for a referral to an occupational therapist. An occupational therapist can help you brainstorm other fall prevention strategies. Some solutions are easily installed and relatively inexpensive. Others may require professional help or a larger investment. If you're concerned about the cost, remember that an investment in fall prevention is an investment in your independence. (credits MayoClinic)

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Due to a scheduling glitch we are doing a rerun today of an episode Paris Scobie did with us earlier this year. Paris is a Mental Health Speaker, Host of the top 1% globally ranked podcast, Live Well Bipolar, & Best-Selling Author of her memoir, Crooked Illness: Lessons From Inside & Outside Hospital Walls. Paris launched Live Well Bipolar to use her lived experience to help others overcome the shame, fear and isolation that can so often accompany living with bipolar. She shares how she went from being a patient struggling from inside the walls of a psychiatric hospital newly diagnosed with bipolar to returning to work at this same hospital years later. This unique perspective has allowed Paris to share her experiences on what truly made a difference for her to help others. Paris works to illustrate how everything she told herself she could never have or be is everything she has become today. Stay connected with Paris and learn more about her work here: https://parisscobie.com/

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This week we discuss strategies autistic adults can use as employees.

Temple Grandin PhD is our distinguished guest this week. Her website gives a great explanation of her theory on how best to prepare autistic children for a more independent life and active social integration through employment. She emphasizes that in earlier generations, (Temple grew up in the 1950s) activities such as newspaper delivery provided young people with formative work experiences. She suggests that, in the absence of such opportunities today, parents can help children build similar skills through neighborhood jobs like dog walking or by encouraging volunteer roles in community centers and places of worship. According to Temple, these experiences cultivate discipline and responsibility, while also enhancing self-esteem through recognition of a job well done.

Temple also stresses the importance of nurturing the distinctive abilities of individuals on the autism spectrum. She argues that traits such as logical reasoning, strong attention to detail, and systematic problem-solving are not only beneficial to the individual but also valuable to society as a whole. Dr. Grandin contends that efforts should focus less on seeking a “cure” for autism and more on recognizing and cultivating these cognitive strengths. In her view, neurodiverse ways of thinking play a critical role in fields such as technology and engineering, making them indispensable to future innovation.

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Bartonella is a genus of Gram-negative bacteria. It is the only genus in the family Bartonellaceae. Facultative intracellular parasites, Bartonella species can infect healthy people, but are considered especially important as opportunistic pathogens. Bartonella species are transmitted by vectors such as fleas, sand flies, and mosquitoes. At least eight Bartonella species or subspecies are known to infect humans. Bartonella henselae is the organism responsible for cat scratch disease.

History

Bartonella species have been infecting humans for thousands of years, as demonstrated by Bartonella quintana DNA in a 4000-year-old tooth. The genus is named for Alberto Leonardo Barton Thompson (1871–October 26, 1950), a Peruvian scientist.

Infection cycle

Though some studies have found "no definitive evidence of transmission by a tick to a vertebrate host," Bartonella species are well-known to be transmissible to both animals and humans through various other vectors, such as fleas, lice, and sand flies. Bartonella bacteria are associated with cat-scratch disease, but a study in 2010 concluded, "Clinicians should be aware that ... a history of an animal scratch or bite is not necessary for disease transmission." All current Bartonella species identified in canines are human pathogens.

SUMMARY

Bartonella is a type of bacteria that can make people very sick. There are three main kinds that cause most of the infections: B. henselae, B. quintana, and B. bacilliformis.

Some of these bacteria are found all over the world (like B. henselae), but others only live in certain places (like B. bacilliformis).

People can catch Bartonella in different ways:

B. henselae – usually from a cat scratch or bite.
B. quintana – spread by body lice.
B. bacilliformis – spread by sand flies.

Once the bacteria get into the body, they infect red blood cells and cause the blood vessels to grow abnormally. This can lead to symptoms like long-lasting fever, swollen lymph nodes, and enlarged liver or spleen.

Doctors figure out if someone has Bartonella using lab tests. They might grow the bacteria in a culture, look for antibodies in the blood (serology), or look at tissues under a microscope. Special tests called PCR can find Bartonella DNA in blood or tissue samples, including heart valves.

Treatment usually involves antibiotics, but the exact medicine depends on which type of Bartonella you have and how sick you are. In some cases, like with cat-scratch disease, a doctor may need to use a needle to drain swollen lymph nodes.

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This week we are not featuring a guest, but will be discussing Haemophilus influenzae, or H. influenzae, a kind of bacteria. It can cause bacterial infections ranging from mild (such as bronchitis) to severe (such as septic arthritis). Treatment includes antibiotics but you may also require hospitalization depending on the severity of your condition.

Haemophilus influenzae (H. influenzae) is a type of bacteria that can cause several different kinds of infections. These bacterial infections can range from mild, such as ear infections, to severe, such as bloodstream infections. The infections typically affect children younger than 5 years old. They also affect people who are immunocompromised, such as those with certain medical conditions.

Some H. influenzae infections are “invasive,” which means the bacteria invade parts of your body that are normally free from germs. For instance, H. influenzae can invade the fluid surrounding your spinal cord and brain, which can cause meningitis. Meningitis is the swelling of the lining of your brain and spinal cord. Invasive diseases usually require hospital treatment and can sometimes be fatal. (Credits: Cleveland Clinic)

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Several preventable diseases are experiencing a resurgence due to declining vaccination rates. These include:

Diphtheria: A bacterial infection that can lead to a thick membrane in the throat and respiratory failure.
Tuberculosis: A bacterial infection that can affect the lungs and other organs.
Chickenpox: A viral infection that can cause blisters and scarring.
Polio: A viral disease that can cause paralysis.
Measles: This highly contagious virus can lead to serious complications, including pneumonia and encephalitis.
Mumps: A viral infection that can cause swelling of the salivary glands and complications such as meningitis.
Rubella: A viral infection that can cause birth defects in pregnant women.
Pertussis (whooping cough): A bacterial infection that can cause severe coughing fits and respiratory problems, especially in infants.

It's important to note that these diseases can also spread among vaccinated individuals, but the vaccines significantly reduce the risk of infection and its severity.

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This Week on PodcastDX: Understanding POTS with Dr. Diana Driscoll This week we are honored to welcome none other than Dr. Diana Driscoll, a world-renowned authority on the autonomic nervous system. An optometrist and Fellow of the American Academy of Optometry (FAAO), Dr. Driscoll is internationally recognized for her groundbreaking research on Postural Orthostatic Tachycardia Syndrome (POTS) and other conditions once thought to be “invisible.”

Dr. Driscoll has dedicated her career to improving the lives of those affected by autonomic disorders. Her journey began as a patient herself, battling POTS. Frustrated by the lack of answers, she self-funded much of her research to accelerate progress for patients today. That personal fight has fueled over a decade of innovation in diagnosis and treatment strategies that are transforming patient care.

In this episode, we explore her unique perspective as both a former patient and a leading researcher. Dr. Driscoll shares her story, her research, and her vision for the future of POTS treatment.

What is Postural Orthostatic Tachycardia Syndrome (POTS)?

POTS is a form of orthostatic intolerance that causes the heart to beat abnormally fast when moving from sitting or lying down to standing up. Breaking down the name helps explain the condition:

• Postural: Related to body position • Orthostatic: Related to standing upright • Tachycardia: A heart rate above 100 beats per minute • Syndrome: A collection of symptoms occurring together

Normally, the autonomic nervous system keeps heart rate and blood pressure stable regardless of position. In POTS, that balance is disrupted. The body struggles to constrict blood vessels and regulate heart rate properly, leading to dizziness, lightheadedness, fainting, fatigue, and more.

Who Does POTS Affect?

POTS affects an estimated 1 to 3 million Americans, most often women between the ages of 15 and 50. However, men can develop the condition as well.

Risk factors include: • Viral or serious infections (such as mononucleosis) • Pregnancy • Physical trauma or surgery • Certain autoimmune conditions (e.g., Sjögren’s syndrome, lupus, celiac disease)

How Does POTS Affect the Body?

When standing, gravity naturally pulls 10–15% of blood into the lower body. Normally, leg muscles and hormonal responses (like the release of epinephrine and norepinephrine) help keep blood circulating back to the brain and heart.

For people with POTS, too much blood pools below the heart. Their blood vessels don’t constrict properly, forcing the heart to compensate by racing. This imbalance causes hallmark symptoms such as dizziness, exhaustion, brain fog, and even fainting.

While POTS is not life-threatening, it can be life-altering. Daily tasks may become difficult, and symptoms often fluctuate over time. The good news: with the right combination of dietary adjustments, medications, and physical activity, many people experience meaningful improvements in their quality of life.

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Join us as Dr. Diana Driscoll shares her remarkable journey, her patient-centered research, and her continuing mission to bring visibility and solutions to the millions living with POTS.

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Gyzele Brown is a proud native of Greenville, MS, now residing in Cleveland, MS. She is the owner and operator of Gyzele’s Salon and Spa, where she’s dedicated to not only transforming looks but also impacting lives through her work. A graduate of Delta State University and Goshen Cosmetology School, Gyzele’s journey began with a background in speech and hearing science — yet her passion for hair and beauty took center stage.

Beyond her career, Gyzele is a proud mother of three amazing children who all have spinal muscular atrophy, a rare genetic disease. Her journey is filled with both challenges and blessings, and she’s here to encourage others, remind them of the power of faith, and show that even in tough times, you can keep going for your family and yourself. Join us as Gyzele shares her inspiring journey, full of hope, and powerful life lessons about strength, faith, and the importance of never giving up.

Spinal muscular atrophy (SMA) is a genetic disease that causes muscle weakness and wasting due to the degeneration of motor neurons. It's a progressive disease that can be fatal in severe forms. SMA is typically caused by mutations in the SMN1 gene, which is responsible for producing a protein vital for motor neuron health. The severity and age of onset vary, with different types of SMA categorized based on symptom onset and severity.

Key aspects of SMA:

Progressive Nature: SMA is a progressive disease, meaning the symptoms worsen over time.
Varied Severity: SMA is classified into types based on the age of onset and severity of symptoms.
Types of SMA:
- Type 1 (Infantile-onset): Most severe, symptoms appear at birth or within the first six months, and many affected individuals don't survive past early childhood.
- Type 2 (Intermediate): Symptoms appear between 6 and 18 months, individuals can sit but not walk unaided, and life expectancy varies.
- Type 3 (Juvenile-onset): Symptoms appear later in childhood, individuals can walk but may have difficulty, and life expectancy is generally normal.
- Type 4 (Adult-onset): Rare, with symptoms appearing in adulthood and causing mild motor impairment.
Symptoms: Symptoms include muscle weakness, difficulty with movement (sitting, crawling, walking), breathing and swallowing problems, and skeletal abnormalities like scoliosis.
Diagnosis: Diagnosis often involves clinical evaluation, genetic testing, and sometimes neurological examinations.
Treatment: While there is no cure, treatments like gene therapy and medications can help manage symptoms, improve motor function, and increase survival time. Physical therapy, occupational therapy, and assistive devices are also important.
Genetic Basis: SMA is primarily caused by mutations or deletions in the SMN1 gene.
Motor Neuron Degeneration: The disease affects motor neurons, which control muscle movement, leading to muscle weakness and atrophy.

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What do we mean when we see the word "Trifecta" ?

In Horse Racing you would be talking about a bet where you must pick the first, second, and third-place horses in the precise order they finish. In skincare, "The Trifecta" can refer to a set of three essential skincare products that work together for visible results, like a cleanser, serum, and moisturizer. But in this show where we discuss healthcare conditions, "medical trifecta" refers to the three specific diseases which are often found to occur together. For today's show that means EDS, (Ehlers Danlos Syndrome) POTs (Postural Orthostatic Tachycardia Syndrome) & MCAS (Mast Cell Activation Syndrome) and our guest is Candace Johnson.

Candace is a mom of three girls and a chronic illness advocate. She shares her journey living with what many of us call “the trifecta”: POTS, MCAS, and Ehlers Danlos Syndrome. She also has small fiber neuropathy. Her goal is to bring awareness, especially for people still searching for answers and to remind others they’re not alone in this.

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This week we talk with Alexis Baker. Alexis, 25, was diagnosed with Friedreich ataxia (FA) five years ago and since then, has been using her voice and social media platforms to raise awareness for the rare disease. Alexis recently started a foundation, RiseUpFA, whose goal is to raise money to provide new walkers and wheelchairs for those in need. She currently lives in Tennessee, loves fashion and is currently planning a wedding to her fiancée.

Friedreich's ataxia is a rare, inherited disease. It damages the spinal cord, peripheral nerves, and the cerebellum part of the brain. It also leads to heart problems. This disease tends to develop in children and teens. It slowly gets worse over time. Unsteady, awkward movements and a loss of feeling due to nerve injury develop as the disease gets worse. People with this disorder may have other health problems, such as diabetes and heart disease, along with nervous system symptoms. (credits Johns Hopkins)

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Migraine can present in a variety of ways. Hemiplegic migraine is a rare form of migraine where people experience weakness on one side of their body (hemiplegia) in addition to the migraine headache attack. The weakness is a form of migraine aura and occurs with other forms of typical migraine aura like changes in vision, speech or sensation. Our guest on today's show is Amber Blackburn. Amber is a Registered Nurse turned blogger and patient advocate for those with chronic illnesses.

Amber Blackburn is a Registered Nurse turned blogger and patient advocate for those with chronic illnesses. She was forced to leave the workforce after ten years as a nurse; this gave her the patient medical experience and perspective. Being diagnosed and living with a chronic illness has given her the experience of everyday living so she understands both sides of the coin. Amber lives with Systemic Lupus, Migraines, Fibromyalgia, Interstitial Cystitis, IBS, Anxiety, Depression and Adrenal Insufficiency secondary to long term steroid use.

Since being forced to leave the traditional workforce due to her illnesses, she has become a strong patient advocate and blogger with her blog being “The World Sees Normal.”

Amber works with the Chronic Disease Coalition. She has had her work published by The Mighty, Yahoo and has been nominated for four WEGO Health Awards. She has published a symptom tracker for those with chronic conditions to track their symptoms and pain to share with their doctors. She understands the need for good communication between patients and doctors, but also support the chronic illness community, making sure those living with illnesses understand they are not alone or isolated.

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This week we discuss dangers in the beauty industry. From a client's perspective, the issues might not be as severe, but the clinicians who must deal with chemicals day in and day out are at a greater risk.

The average woman uses 12 different beauty products every day — cleansers, conditioners, hair dyes, fragrances, skin care products, scented lotions, nail polish, and makeup, to name a few. Take a quick glance at the labels, and you'll see a cocktail of chemical components.

You might assume that all these ingredients have been tested to ensure that they're safe for long-term use. That's not the case.

At least on the federal level, no one is checking to make sure that the chemicals you're putting on your body are harmless. "Products are tested to make sure they don't cause short-term problems, such as skin irritation. But they're not tested for long-term safety," says Dr. Kathryn M. Rexrode, associate professor of medicine and chief of the Division of Women's Health at Harvard Medical School. The FDA steps in only if people actually complain about a product because they suspect it harmed them. Prior to that, the onus is on the company alone.

"Just because it's on your shelf doesn't mean that it's safe," says Tamarra James-Todd, the Mark and Catherine Winkler Assistant Professor of Environmental Reproductive and Perinatal Epidemiology at the Harvard T.H. Chan School of Public Health. With this in mind, women should take some time to consider what they're putting on their bodies each day and how it could potentially affect their health, she says.

Hair dye and breast cancer

There's reason for concern about many of the chemicals in popular personal care products on the market today. Case in point: a study published online Dec. 3, 2019, by the International Journal of Cancer found a link between hair dye and breast cancer. Women in the study who used permanent hair dye at least once in the 12-month period leading up to the study had a 9% higher risk of developing breast cancer than women who didn't use hair dye. And when the study authors broke the findings down by race, they found an even higher risk for African American women. Women in that group who used any permanent dye in the previous 12 months had a 45% higher risk of developing breast cancer compared with women who did not use hair dye. It didn't seem to matter how often or for how many years the women had used the dye.

The findings were not surprising, says James-Todd. "We conducted a study a year ago in which we saw similar findings for hair dyes," she says. Some hair care products contain more than 5,000 chemicals, including some known to disrupt the body's natural hormone balance or to have cancer-causing effects in animals, according to study authors. Even so, studies looking at hair dyes in the past have been a mixed bag, with some finding links between health problems and dye use, and others finding no link. The differences found in more recent studies, says James-Todd, may be due to the fact that they are testing different products. Today's products use different chemicals than older formulations, which were not linked to health risks in some previous studies.

Analyzing the study results

Authors of the 2019 study drew on data from the Sister Study, which enrolled more than 50,000 women — the healthy sisters of women with breast cancer — ages 35 to 74. The study ran from 2003 to 2009 and used questionnaires, which were updated every three years. The surveys included questions about how often women used hair dye, as well as what colors and types of dye they used and whether it was permanent or semi-permanent. The study also used information gathered about other hair products, specifically chemicals used to straighten hair. The average follow-up period for the study was a little over eight years, and the current analysis included information gathered through 2016.

The analysis also linked hair straightening products to a higher risk of breast cancer. These chemical products were associated with an 18% higher risk of breast cancer in women who used them in the 12 months before the study period. The more often women used straightener, the higher the risk. Women who used the products every five to eight weeks had a 31% higher risk of going on to develop breast cancer compared with nonusers. Although African American women in the study were more likely than others to use straighteners, the increase in breast cancer risk was similar for all races.

There didn't appear to be an elevated breast cancer risk among women who used semi-permanent dyes, except among women who used the dyes at home. Researchers speculated this may be because they were more likely to get the dye on their skin, or to use the dyes in spaces that weren't well ventilated, leading them to breathe in higher amounts of chemicals.

Change your beauty standard

It may not be easy to let your hair go gray and to embrace your wrinkles, but it's a cultural shift women should consider. Being healthy is beautiful, and women should challenge the cultural standard of beauty. "It's about being comfortable with these changes and changing what's acceptable," says Tamarra James-Todd, assistant professor at the Harvard T.H. Chan School of Public Health. "We should start teaching our children, teaching the next generation, that you should embrace the different stages of your life and not try to alter that."

Interpreting the study results

It's important to note that all the participants in the 2019 hair dye study were deemed to have a high risk for breast cancer because their sisters had the disease. This means that the findings might not apply to the average population. However, because this particular study already focused on a group of women that were at high risk because of family history, it's likely that the additional elevated risk seen in African American women was not due to genetic factors, says James-Todd. It's more likely to reflect environmental factors, such as differences in the chemicals used in products typically marketed to these women, she says. In the past, scientists have found higher concentrations of problematic hormone-disrupting chemicals in products marketed to African American women, said study authors.

In addition, they noted that breast cancer rates have been increasing in recent years among African American women, who are more often diagnosed with aggressive types of breast cancer and are more likely to die from the disease.

What to take from the study

So, does this mean that women should stop using hair color entirely? Dr. Rexrode says it's too soon to say. "Over all, I don't tell people never to dye their hair again based on this paper. But a 40% increased risk is large enough for concern," she says. So, the findings also shouldn't be ignored, and the topic warrants more study.

For the average woman in the study (that is, one whose sister had breast cancer), exposure to hair dye increased her baseline risk of breast cancer, she says. While there are certain breast cancer risk factors that you can't control, such as your family history or how old you were when you started menstruating, you can choose your hair products and how often you use them.

Reducing your chemical exposure

While researchers continue to look into this issue, James-Todd and Dr. Rexrode say there are several steps you can take to reduce potential risks related to personal care products.

Do your research. When choosing a product, look at the label to see what chemicals it contains, and determine if it's something you want to use. Organizations such as the nonprofit Environmental Working Group (www.ewg.org) have analyzed many common products and provide information about potential safety concerns. The organization ranks some common beauty products on a scale from 1 to 10, from those generally thought to be safe to those that contain chemicals that raise more concerns, says James-Todd. "Find out as much as you can about what you are using," she says.

Find safer alternatives. If products you are currently using contain potentially harmful chemicals, switch to a safer option if one is available. The nonprofit Silent Spring Institute has a smartphone app called Detox Me that you can use in the store to scan product barcodes. If a safer option is available, it will let you know. It also offers a Detox Me Action Kit, which allows you to send a urine sample to have your chemical exposure levels tested to get an idea of how your levels compare to others in the United States. The kit also gives you ideas on how to reduce your exposure.

Be skeptical of product claims. Many companies are legitimately working to develop safer products, but some manufacturer claims are dubious. Many companies will remove chemicals that have been highlighted as problematic, such as bisphenol-A or phthalates (chemicals known to be endocrine disrupters, substances that mimic or suppress human hormones). But they may then replace those chemicals with ones that are equally problematic. So, the products aren't really safer, and in some cases, they may be even worse than the original, says James-Todd.

Pare down. While it may be tempting to fill your bathroom shelves with all the latest lotions and potions, making more judicious choices may be a better option. Limiting your options to products you consider essential can reduce your exposure. "For example, I love perfume, but I don't wear it anymore," says James-Todd.

Go natural. Many beauty treatments can be mixed up in your kitchen. Look online for recipes for natural skin and hair treatments. But be aware that some "natural" consumer products can also bring health risks. For example, essential oils are often recommended as an alternative to perfumes and fragrances. But some, in particular lavender and tea tree oils, have estrogenic properties that can pose some of the same health risks as their chemically laden counterparts, says James-Todd. Natural does not always mean safer.

The bottom line: "Women should be thinking carefully about the products they use," says Dr. Rexrode. "And I think we should be demanding more information about their safety." ( Credits: Harvard Health)

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This week's episode has the cohosts talking about social isolation and earlier death among the elderly population.

Studies have shown that loneliness is associated with a higher risk of mortality in older adults. For example, one study found that individuals experiencing loneliness at one or more points in time had a higher hazard for mortality compared to those who never experienced loneliness.

Loneliness can trigger physiological stress responses, potentially leading to chronic inflammation and reduced immunity. These factors can contribute to the development of various health problems, including heart disease, Alzheimer's, and other age-related illnesses.

Social isolation, which is closely linked to loneliness, can limit access to social support, including assistance with daily tasks, emotional support, and healthcare. This lack of support can negatively impact both physical and mental well-being.

Loneliness and social isolation have also been linked to poorer cognitive function and an increased risk of conditions like dementia.

Conversely, research suggests that maintaining social connections and receiving regular visits from loved ones can mitigate the risks associated with loneliness and potentially increase longevity.

In essence, according to many studies prior to 2025, loneliness can create a cycle of negative health impacts, potentially increasing the risk of premature death, while social connections and support can act as protective factors.

HOWEVER.... a new study was just reported last month that questions the previous assumptions.

Researchers tracking home care recipients in Canada, Finland, and New Zealand discovered something unexpected: lonely older adults were actually less likely to die within a year compared to their non-lonely peers. Among the most vulnerable seniors — those receiving help at home with daily activities — being lonely was associated with an 18% to 23% lower risk of death.

We are sure more research will now be done to either support the newest study or previous studies. Time will tell!

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Tularemia is a highly infectious disease you get from the bacterium F. tularensis. You can get it from bug bites, infected animals, contaminated water or food, and particles of bacteria in the air. Tularemia can affect your skin, eyes, throat, lungs and intestines. Tularemia should be treated as soon as possible with antibiotics. We will not have a guest for this week, but would love to invite anyone who has been diagnosed with Tularemia to be a guest on a future show.

Tularemia causes your lymph nodes to painfully swell and other symptoms in your lungs, eyes, throat and intestines, depending on where the bacteria infects you.

It is a zoonotic disease, which means it spreads between animals and humans. Commonly called “rabbit fever” or “deer fly fever,” people get tularemia from exposure to deer flies and ticks that have F. tularensis infections. You can also get it from contact with infected animals (generally rabbits, hares and rodents) or food and water sources contaminated with the bacteria. Tularemia can cause your lymph nodes to swell severely, which looks like large bumps on your body. Sometimes it causes broken skin (ulceration) at the site where F. tularensis bacteria entered your body. (Credits: Cleveland Clinic)

People can become infected in several ways, including:

Tick and deer fly bites
Skin contact with infected animals
Drinking contaminated water
Inhaling contaminated aerosols or agricultural and landscaping dust
Laboratory exposure

In addition, people could be exposed as a result of bioterrorism.

Symptoms vary depending how the person was infected. Tularemia can be life-threatening, but most infections can be treated successfully with antibiotics.

Steps to prevent tularemia include:

Using insect repellent
Wearing gloves when handling sick or dead animals
Avoiding mowing over dead animals

In the United States, naturally occurring infections have been reported from all states except Hawaii.

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Our guest for this week is Sara Olson. Sara (her TikTok name is SKEEETAH) is from the Wolf River area of Wisconsin which just happens to hold the highest concentration of the fungus that causes Blastomycosis. When Sara got Blastomycosis in January 2024, she thought it was 'just the flu'. With a chest xray, she was diagnosed with pneumonia. Several rounds of antibiotics didn't help so she did a CT scan where they found an embolism. Still not knowing anything else, they continued treating her for bacterial pneumonia. They did a swab of her sputum in which her health providers found no bacterial growth, but there was fungal growth. "For some reason they didn't do fungal testing" she was admitted, released and readmitted all the while she was being treated for bacterial pneumonia. The final hospitalization had her O2 levels drop to 30 and she was intubated, her family was called to come and say their goodbyes... You'll have to listen to the interview to learn more. She is lucky to be alive!

Blastomycosis is a fungal infection and was linked to the Little Wolf River in Waupaca County, Wisconsin, during a summer 2015 outbreak. People who went tubing on the river were exposed to the fungus, with 59 confirmed and 39 probable cases reported according to the Wisconsin Department of Health Services (W-DHS). The fungus, Blastomyces, lives in soil and decaying organic matter, and its spores can become airborne when disturbed. Inhaling these spores can cause blastomycosis, a disease primarily affecting the lungs, though it can spread to other parts of the body. While most blastomycosis cases are sporadic, this outbreak highlighted the need for awareness about this preventable cause of illness. Key Details about the Outbreak: * Cause: The outbreak was attributed to the fungus Blastomyces, which is commonly found in soil and decaying matter. * Exposure: People who participated in river tubing on the Little Wolf River were exposed to the fungus. * Symptoms: Blastomycosis can cause flu-like symptoms, such as fever, cough, muscle aches, and fatigue, but it can also lead to serious health problems if not treated. * Transmission: The infection is not spread from person to person. * Treatment: Blastomycosis can be treated with antifungal medications. * Outbreak Scale: This outbreak was one of the largest in recent Wisconsin history, with 59 confirmed and 39 probable cases. * Prevention: Awareness of the potential for infection is key, especially in areas where the fungus is known to be present.

Additional Information: * Endemic Area: Blastomycosis is endemic in the Ohio and Mississippi River valleys, the Great Lakes region, and the southeastern United States according to the CDC. * Symptoms: Common symptoms include cough, fever, chest pain, fatigue, and skin sores. * Risk Factors: Individuals with weakened immune systems or chronic illnesses may be more susceptible to severe illness. * Not Limited to the Wolf River: While the Little Wolf River outbreak was significant, blastomycosis can occur in other areas with suitable environmental conditions.

Blastomyces lives in moist soil in parts of North America. It’s too small to see, so you can breathe it into your lungs without knowing it. There, it can grow and make you sick. It sometimes spreads to your skin or other parts of your body.

It’s hard to avoid breathing in Blastomyces fungus if you live in an area where it’s common. While not entirely preventable, there are some steps you can take to reduce your risk of blastomycosis:

Avoid disturbing large areas of dirt and dust, especially in areas near water.
If your job or hobbies expose you to soil that’s likely to contain Blastomyces, wear an N95 (or KN95) respirator mask to help filter the air you breathe.

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When people ask about getting sick on a cruise ship, they’re often worried about norovirus. But what happens if you catch a nasty cold, sprain your ankle, or (even worse) have a serious medical emergency like a heart attack? Rest assured, because cruise ships are well prepared.

Are there doctors on cruise ships? Of course! Cruise ships will always have at least one doctor along with a staff of nurses. Larger ships will have more personnel with larger infirmaries.

What kind of medications do they have? If you you’re looking for aspirin, seasickness meds or other basic over-the-counter meds, you probably can skip the a trip the infirmary and just buy them at the ship’s store. If you need prescription meds, medical facilities on cruise ships will have drugs on hand to treat infectious diseases like the flu and norovirus, problems with of the eyes, ear, nose and throat, and a variety of gastrointestinal and respiratory issues.

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Wastewater monitoring is a valuable, efficient, and robust tool that public health officials can use to guide public health decision making across the nation.

When we turn on the tap or flush the toilet, we often don’t think about where all that water goes. Wastewater, the used water from our homes, schools, and businesses, holds valuable information about the health of our community. Wastewater monitoring can help cities manage wastewater effectively and also creates a safer, healthier, and more responsive living environment for their communities. This blog takes a closer look at five important things to know about wastewater monitoring and how it can help city leaders ensure the health of their communities.

Wastewater is more than just water Wastewater is a mix of bits and pieces that go down our drains – soap, food bits, medicines, toilet paper, and even poop. When this mix is let loose into the environment without proper cleaning, it can mess up our lakes, rivers, and oceans. And not only that, it can be bad for our health too.

Wastewater monitoring gives communities a health checkup Just as doctors examine us to catch early signs of illness, experts examine wastewater to see what’s in it. They look for things like diseases that can affect our health. Wastewater monitoring data can help city leaders identify disease spread early and take steps to keep everyone safe.

Wastewater monitoring is an early warning system for disease spread Wastewater holds clues about outbreaks of diseases like COVID-19, polio, flu, and more before they happen. When experts test wastewater, they can notice if diseases are starting to spread more. This helps them catch possible outbreaks early and take action to keep everyone safe. They don’t leave anyone out—every home, business, and neighborhood connected to the sewage system is included in the process.

Monitoring wastewater involves sampling, testing, and analysis * Sampling: Small amounts of wastewater are collected from different points in the treatment process. Experts use these samples to see what’s in the water.
Testing: Using various tools and equipment, they test the samples to find out the levels of chemicals, bacteria, and other substances.
Analysis: Experts analyze the data to understand the changes in disease spread and whether new diseases are starting to appear. Analysis results enable city leaders to make proactive decisions to protect community health and well-being.
Wastewater monitoring is a special tool for city leaders that benefits everyone City leaders can use information from monitoring wastewater to make important decisions that protect the health of everyone in their communities. Wastewater monitoring data can help city leaders: * Talk to the public in better ways
Promote actions to keep the community safe (like wearing masks and staying apart)
Send medical tests, vaccines, and treatments to the people and places that need them the most
Make sure hospitals and clinics have enough staff

Wastewater might not be dinner table conversations, but it impacts our lives more than we realize. Wastewater monitoring is an important tool that can help city leaders make good decisions and take early action to prevent disease spread to keep the people they serve healthy. So, next time you flush, remember that what you send down the drain has important information that can help create and maintain healthy communities where everyone thrives.

About the authors:

Sara Zeigler and Aliyah Ali are freelance writers at the National League of Cities.

This article is a product of NLC’s partnership with WastewsterSCAN. The National League of Cities (NLC) is partnering with WastewaterSCAN, a national initiative to monitor wastewater for a growing list of infectious diseases including COVID-19 and its variants, flu, and RSV gives communities reliable, sensitive, and actionable data to help them make public health decisions. As a national partner, NLC is raising awareness about the important role of wastewater monitoring in guiding public health responses, creating learning opportunities for NLC members interested in wastewater monitoring, and sharing information with communities across the country about WastewaterSCAN.

CREDITS: https://www.nlc.org/article/2023/08/23/5-essential-things-you-need-to-know-about-wastewater-monitoring/

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The Public Health Agencies are created to deliver on the Government's commitment to help protect the health and safety of all people and communities in whatever country they live in.

For example: Canada's activities focus on:

promoting health, well-being and equity
protecting against threats to public health
preventing and reducing diseases and injury

Health Canada is responsible for helping Canadians maintain and improve their health. It ensures that high-quality health services are accessible, and works to reduce health risks.

The UK supports ministers in leading the nation’s health and social care to help people live more independent, healthier lives for longer.

They are responsible for:

supporting and advising their ministers: they help them shape and deliver policy that delivers the government’s objectives
setting direction: they anticipate the future and lead debate ensuring they protect and improve global and domestic health
accountability: they make sure the department and their arm’s length bodies deliver on their agreed plans and commitments
acting as guardians of the health and care framework: they make sure the legislative, financial, administrative and policy frameworks are fit for purpose and work together
troubleshooting: in the last resort, the public and Parliament expect them to take the action needed to resolve crucial and complex issues

Although we at PodcastDX reside in the USA, due to recent administration changes we do not feel comfortable listing them as a resource at this time.

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Fluoride has been in the news recently with some people questioning the worth of adding this vital mineral to the water supplies in the United States.

Fluoride repairs and prevents damage to teeth caused by bacteria in the mouth. Bacteria in the mouth produce acid when a person eats or drinks. The acid dissolves minerals in a tooth's surface, making the tooth weaker and open to cavities.1

Fluoride replaces the minerals lost from a tooth due to acid breakdown. Some fluoride can replace minerals in the tooth surface, making the outer enamel layer harder to dissolve. Fluoride also may reduce the amount of acid that cavity-causing bacteria produce, as well as making it harder for these bacteria to stick to the teeth.1

Protecting teeth requires consistent, low levels of fluoride in the mouth (in the saliva and on tooth surfaces). Fluoride can also be incorporated into developing dental enamel before a tooth erupts into the mouth, enhancing the tooth's resistance to acid breakdown and preventing cavities later in life. (credits)

Some public figures have made false claims that adding fluoride to drinking water poses health risks, such as reduced intelligence in children and cancer. When used at recommended levels, fluoride in drinking water is safe and effective for preventing tooth decay, which also provides benefits for people’s overall health. Extensive research has consistently demonstrated that optimal fluoridation does not pose a detectable risk of cancer or other serious health issues. (credits)

The discovery of Fluoride as a preventative for tooth decay.

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Many people assume that ingesting cannabis — whether through edibles, oils, or tinctures — eliminates the cardiovascular risks associated with smoking it. While it's true that edibles avoid the harmful byproducts of combustion (such as carbon monoxide and tar), ingested cannabis still carries significant heart health risks due to the effects of tetrahydrocannabinol (THC), its main psychoactive compound.

When THC is absorbed through the digestive system, it can cause substantial increases in heart rate and blood pressure — sometimes more dramatically than when cannabis is smoked or vaped. This cardiovascular strain can persist for several hours, making the heart work harder for an extended period. For individuals with existing heart disease, high blood pressure, or other risk factors, this can significantly increase the chances of experiencing arrhythmias, heart attacks, or strokes. Additionally, edible cannabis products often contain higher doses of THC, and because their effects are delayed, people sometimes consume more than intended — compounding the cardiovascular impact.

In short: while ingesting cannabis might seem safer than inhaling it, it still triggers systemic effects that can stress the heart and blood vessels — particularly in older adults or anyone with underlying cardiovascular conditions.

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This week we have re-posting a brief insight to the fact that stress can play havoc on the immune system and we hope to have a new guest soon to discuss this weighty problem. If you are a member of the health care community and would like to be a guest on our show to discuss how stress affects the immune system, please drop us a line at PodcastDX@yahoo.com. Remember chronic stress = excessive cortisol and too much cortisol = a host of medical ailments.

Poor sleep Cortisol levels are supposed to drop at nighttime, allowing your body to relax and recharge. But if your cortisol levels are too high, you might notice that, even if you’ve been tired all day, you get a second wind right around bedtime. Then you toss and turn all night – and feel tired again the next day. Over time, high levels of cortisol deplete the adrenal glands and predispose you to chronic fatigue. So if you feel like your get up and go got up and went, you’re probably stressed.

You’re gaining weight, especially around your abdomen, even when you eat well and exercise. Cortisol tends to make you thick around the middle, even when you’re doing everything “right.”
You catch colds and other infections easily. Cortisol deactivates your body’s natural self-repair mechanisms, which means that your immune system which is perfectly designed by nature to keep you healthy goes caput, leaving you vulnerable to every cootie you encounter.
You crave unhealthy foods. Cortisol raises your blood sugar, putting you at risk of diabetes. High glucose levels then bump up your insulin levels, which then drop your blood sugar it's a vicious cycle!

You experience backaches and headaches. When your cortisol levels are high over a long period of time, your adrenal glands start to get depleted. This raises prolactin levels, increasing the body’s sensitivity to pain, such as backaches and muscle aches. Excessive cortisol also hypersensitizes the brain to pain, such that even the slightest twinge can excite the nerves of the brain, causing headaches.

Lo-Libido Consider cortisol the anti-Viagra. When stress hormones are high, libido-inducing hormones like testosterone drop.

GI Issues. Your gastrointestinal system is very sensitive to stress hormones like cortisol. You might experience nausea, heartburn, abdominal cramps, diarrhea, or constipation as a result of too many stress hormones.
Emotional Problems. Cortisol and epinephrine can lead to jitters, nervous stomach, feelings of panic, even paranoia. High levels of cortisol suppress production of serotonin, and next thing you know, you’re awash in doom and gloom.

Chronic High Cortisol=Adrenal Fatigue When your cortisol levels are bumped up, day after day, your adrenal glands, responsible for the production of cortisol, get worn out. Precursor hormones required for cortisol production get depleted. This could result in full blown adrenal collapse.

(Credits: Dr Lissa Rankin M.D. https://binged.it/3xgOpDc )

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This week's episode is very special for all of the veterans out there... We welcome back three previous guests to discuss receiving healthcare at the Veteran Health Administration (VHA) a component of the Department of Veteran Affairs (VA).

Our main guest (from left to right above) is Mark Frerichs, a Navy veteran who was held captive by the Taliban while working as a government contractor in Afghanistan. His battle didn't end with his eventual release and he was home trying to get the health care services he deserved.

Supporting him are: Kristal Kent, an Army veteran explaining the difficulties she has taken on as a female veteran with what some call "invisible-illness" Fibromyalgia.

And Marine Corps veteran Brain Tally who also had great difficulty within the VA, so much so that he took it upon himself to sponsor a bill and get a new law that will help countless numbers of veterans if they run into problems with their contract doctors in the VA.

Although two of the three co-hosts here at PodcastDX are also Army veterans, Jean Marie and Lita will not provide their own input on the topic for this episode. They do however completely agree with the difficulties navigating the largest healthcare system in the United States.

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Nitrous oxide, also sometimes known as “laughing gas,” is used in medicine for its sedative and anesthetic (pain prevention) properties. Joseph Priestley, an English chemist, and multidisciplinary scholar, first synthesized nitrous oxide, which has the chemical formula N2O, in 1772. After Priestley’s initial discovery of this substance, fellow chemist Humphry Davy performed various tests on the substance, including breathing the gas alone, with oxygen, and with air. Through this testing, it became clear that nitrous oxide had psychogenic properties, including as a sedative and anesthetic (pain-preventer).

At first, nitrous oxide was not used for its medicinal properties; it was sold recreationally as “laughing gas.” However, it was established for use in dentistry in the mid-1860s to relieve discomfort from tooth extractions and other painful dental procedures. By the 1880s, it was used for anesthesia during labor and childbirth.

Today, nitrous oxide is still used in dentistry, during labor and childbirth, as well as in emergency medicine. When used medicinally, nitrous oxide is delivered with 30-70% oxygen so a person is never breathing in 100% nitrous oxide. Breathing in 100% nitrous oxide displaces oxygen from the lungs and can result in asphyxiation, damage the body’s organs, and even death.

Nitrous oxide is sometimes misused recreationally for its euphoric, pleasurable and hallucinogenic effects. However, inhaling nitrous oxide outside of medical settings can be dangerous and even deadly, particularly when used heavily. Although it’s not common, repeated use of inhalants like nitrous oxide and whippets can also result in addiction, or substance use disorder. (CREDITS)

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Vaccination is one of the best ways to prevent diseases. Over the past 50 years, essential vaccines saved at least 154 million lives (1). During the same period, vaccination has reduced infant deaths by 40%. Together with governments, vaccine manufacturers, scientists and medical experts, WHO's vaccine safety program is constantly helping monitor the safety of vaccines. This helps ensure that vaccines are safe for you and your family.

In the United States, a number of safeguards are required by law to help ensure that the vaccines we receive are safe. Because vaccines are given to millions of healthy people—including children—to prevent serious diseases, they’re held to very high safety standards.

Every authorized or approved vaccine goes through safety testing, including:

Testing and evaluation of the vaccine before it’s licensed by the Food and Drug Administration (FDA) and recommended for use by the Centers for Disease Control and Prevention (CDC)
Monitoring the vaccine’s safety after it is recommended for infants, children, or adults

Before a vaccine is ever recommended for use, it’s tested in labs. This process can take several years. FDA uses the information from these tests to decide whether to test the vaccine with people.

During a clinical trial, a vaccine is tested on people who volunteer to get vaccinated. Clinical trials usually start with 20 to 100 volunteers, but eventually include thousands of volunteers. These tests can take several years and answer important questions like:

Is the vaccine safe?
What dose (amount) works best?
How does the immune system react to it?

Throughout the process, FDA works closely with the company producing the vaccine to evaluate the vaccine’s safety and effectiveness. All safety concerns must be addressed before FDA licenses or authorizes a vaccine.

Once a vaccine is approved or authorized, it continues to be tested. The company that makes the vaccine tests batches to make sure the vaccine is:

Potent (It works like it’s supposed to)
Pure (Certain ingredients used during production have been removed)
Sterile (It doesn’t have any outside germs)

FDA reviews the results of these tests and inspects the factories where the vaccine is made. This helps make sure the vaccines meet standards for both quality and safety.

Once a vaccine is recommended for use, FDA, CDC, and other federal agencies continue to monitor its safety.

The United States has one of the most advanced systems in the world for tracking vaccine safety. Each of the systems below supplies a different type of data for researchers to analyze. Together, they help provide a full picture of vaccine safety.

Vaccine Adverse Events Reporting System (VAERS): VAERS is an early warning system managed by CDC and FDA that is designed to find possible vaccine safety issues. Patients, health care professionals, vaccine companies, and others can use VAERS to report side effects that happen after a patient received a vaccine. Some side effects might be related to vaccination while others might be a coincidence (happen by chance). VAERS helps track unusual or unexpected patterns of reporting that could mean there’s a possible vaccine safety issue that needs further evaluation.
The Vaccine Safety Datalink (VSD): VSD is a collaboration between CDC and several health care organizations across the nation. VSD uses databases of medical records to track vaccine safety and do research in large populations. By using medical records instead of self-reports, VSD can quickly study and compare data to find out if reported side effects are linked to a vaccine.
Post-licensure Rapid Immunization Safety Monitoring System (PRISM), links to an external website, opens in a new tab: PRISM is part of the Sentinel Initiative, which is FDA’s national system for monitoring medical products after they’re licensed for use. PRISM focuses on vaccine safety—it uses a database of health insurance claims to identify and evaluate possible safety issues for licensed vaccines.
Clinical Immunization Safety Assessment Project (CISA): CISA is a collaboration between CDC and a national network of vaccine safety experts from medical research centers. CISA does clinical vaccine safety research and—at the request of providers—evaluates complex cases of possible vaccine side effects in specific patients.
Biologics Effectiveness and Safety (BEST) System: A system that uses multiple data sources and rapid queries to detect or evaluate adverse events or study specific safety questions.
Additional research and testing: The Department of Defense (DoD), the U.S. Department of Veterans Affairs (VA), and the Indian Health Service (IHS) have systems to monitor vaccine safety and do vaccine safety research. The National Institutes of Health (NIH) and the Office of Infectious Disease and HIV/AIDS Policy (OIDP) also support ongoing research on vaccines and vaccine safety. During emergencies, such as the COVID-19 pandemic, additional safety activities are utilized to help evaluate the data in quickly and with special populations. For example, a new smartphone tool called V-safe uses text messaging and surveys to check in with COVID-19 vaccine recipients after vaccination. (CREDITS)

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Whooping cough, also known as pertussis, is a highly contagious respiratory infection caused by the bacteria Bordetella pertussis. It's characterized by severe, persistent coughing fits, often ending with a high-pitched "whoop" sound. The disease can be very serious, especially for infants, and is preventable through vaccination.

Whooping cough is an illness that can spread easily. It's also called pertussis. An infection with bacteria causes it. Many people with the illness get a serious hacking cough. Breathing in after coughing often causes a high-pitched noise that sounds like a "whoop."

Before the vaccine for pertussis came out, whooping cough was thought of as a childhood disease. Today, whooping cough mainly affects children too young to have gotten all their shots of the vaccine. The illness also tends to affect teenagers and adults whose protection from the vaccine has faded.

Deaths linked with whooping cough are rare. Most often, they occur in infants. But pregnant people can help protect their babies by getting a booster shot of the vaccine during pregnancy. Vaccination also is recommended for other people who will have close contact with an infant.

Once you become infected with whooping cough, it takes about 5 to 10 days for symptoms to start. Sometimes it takes up to three weeks. The symptoms often are mild at first. They may seem like those of a common cold. They can include:

Runny or stuffy nose.
Red, watery eyes.
Fever.
Cough.

After a week or two, the symptoms become worse. Thick mucus builds up inside the airways. This causes rapid coughing that can't be controlled. The cough can last for weeks or months, and it may be worse at night. Intense coughing attacks may cause:

Vomiting.
A red or blue face.
Extreme tiredness.
A high-pitched "whoop" sound during the next breath of air.

People with mild illnesses often don't make the whooping sound. Sometimes, an ongoing hacking cough is the only symptom of whooping cough in teens and adults.

Many babies with the illness don't cough at all. Some babies and young children might.

Gag or struggle to breathe.
Have skin, lips or nails that turn blue or purple.
Have life-threatening pauses in breathing called apnea.

(credits)

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What’s your plan for this summer? Enjoying the water? Going camping? Firing up the grill? Whatever you prefer, we have safety steps to follow. And don’t forget your furry friends. There are steps you can take to help keep them safe too.

Skin safety * Children's skin is more susceptible to sunburns and UV damage from the sun than adults. Before going outside, apply sunscreen and dress your kids in protective clothing like rash guards and hats. * Choose a sunscreen with a minimum SPF of 30 with broad-spectrum protection that blocks both UVA and UVB rays. * Sunscreen is only safe for children over 6 months old. For babies under 6 months, keep them shaded and avoid direct sunlight. * Children should also wear sunscreen on cloudy days. Even though the sun is hidden behind clouds, UV rays can still penetrate the skin and cause harm. * Stay indoors during the peak sun hours. * Warm weather can dry out skin. Apply a moisturizing cream or lotion after bath time and before bed to keep skin hydrated.

Water safety * Babies and small children can drown in just two inches of water. Keep a close eye on children around swimming pools, lakes, rivers, kiddie pools, and bathtubs and small containers of water like toilets, buckets, ice chests, or water tables. Make sure they stay covered, have a safety latch, or are kept out of reach. * Children can be quick and slip away in an instant, so keep eyes on them at all times. * Children can take swimming lessons as early as their first birthday. Other types of swimming lessons like Infant Swimming Resource (ISR) are an option for babies under 12 months. ISR lessons teach survival and self-rescue skills. * Only swim in areas with a certified lifeguard. * Never go into the ocean after dark..

Nutrition safety * Keep your kids hydrated throughout the day by offering plenty of water to drink. * Have water bottles nearby and fill them with ice to keep the water cold. Insulated stainless steel bottles keep water cold for hours. * In hot weather, offer hydrating foods like watermelon, cucumbers, berries, homemade fruit pops, and smoothies. If your child doesn't like drinking plain water, try infusing it with citrus fruits or fresh herbs for added flavor. * When eating and cooking outdoors, avoid leaving raw meat or prepared foods in the sun to prevent foodborne illnesses. * When BBQing, use an internal meat thermometer to ensure meats reach a safe internal temperature before eating. * Always supervise open flames or BBQ grills and keep kids’ toys and activities away from these areas for safety.

Weather safety * Avoid outdoor play during peak sun hours to prevent dehydration and heat exhaustion and heat stroke. * Symptoms of heat exhaustion include dizziness, fatigue, weakness, and nausea. If your child shows any of these signs, get them to a cool place right away, offer water, and use a cool bath or washcloth to help lower their temperature. If symptoms persist after an hour, seek medical attention immediately. * Never leave children or pets alone in a car, even for a few minutes, as temperatures can become dangerous quickly. * Avoid swimming or entering any body of water during thunderstorms or lightning.

Insect safety * Apply insect repellent on children before heading outdoors if bugs are around. Use an EPA-registered insect repellent. * Eliminate standing water around your home to reduce the number of mosquitoes and other bugs nearby. * If you live in an area with a lot of insects, plan indoor activities to avoid bug bites, especially in the evening. * When planning an activity in a bug-prone area, dress children in long-sleeve shirts and long pants made from lightweight, breathable fabrics. * Keep doors and windows closed whenever possible. If you want to open them, consider installing screens to keep bugs out. (credits)

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Hepatitis means inflammation of the liver. The liver is a vital organ that processes nutrients, filters the blood, and fights infections. When the liver is inflamed or damaged, its function can be affected. Heavy alcohol use, toxins, some medications, and certain medical conditions can cause hepatitis. However, hepatitis is often caused by a virus. In the United States, the most common types of viral hepatitis are hepatitis A, hepatitis B, and hepatitis C.

Hepatitis D, also known as “delta hepatitis,” is a liver infection caused by the hepatitis D virus (HDV). Hepatitis D only occurs in people who are also infected with the hepatitis B virus. Hepatitis D is spread when blood or other body fluids from a person infected with the virus enters the body of someone who is not infected. Hepatitis D can be an acute, short-term infection or become a long-term, chronic infection. Hepatitis D can cause severe symptoms and serious illness that can lead to life-long liver damage and even death. People can become infected with both hepatitis B and hepatitis D viruses at the same time (known as “coinfection”) or get hepatitis D after first being infected with the hepatitis B virus (known as “superinfection”). There is no vaccine to prevent hepatitis D. However, prevention of hepatitis B with hepatitis B vaccine also protects against future hepatitis D infection.

Hepatitis E is a liver infection caused by the hepatitis E virus (HEV). HEV is found in the stool of an infected person. It is spread when someone unknowingly ingests the virus – even in microscopic amounts. In developing countries, people most often get hepatitis E from drinking water contaminated by feces from people who are infected with the virus. In the United States and other developed countries where hepatitis E is not common, people have gotten sick with hepatitis E after eating raw or undercooked pork, venison, wild boar meat, or shellfish. In the past, most cases in developed countries involved people who have recently traveled to countries where hepatitis E is common. Symptoms of hepatitis E can include fatigue, poor appetite, stomach pain, nausea, and jaundice. However, many people with hepatitis E, especially young children, have no symptoms. Except for the rare occurrence of chronic hepatitis E in people with compromised immune systems, most people recover fully from the disease without any complications. No vaccine for hepatitis E is currently available in the United States. (credits CDC)

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Lindsey grew up in Charlotte NC and is currently residing nearby in Belmont, NC with her husband and dog. She was diagnosed in May of 2019 after dealing with symptoms since childhood. She was previously misdiagnosed and had doctors dismiss her sleepiness for being a normal teenager or college student. She continued to press doctors for answers and finally received a diagnosis and began treatment less than a year ago. She is now trying to speak out an advocate so that others do not have to have the same long path to diagnosis she did.

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On today's show we are speaking once again with Sheila Ames. As you may recall, Sheila is a Registered Nurse and the founder of "Ames Alchemy Coaching" which can be found on Facebook and Instagram. Today she joins us to discus her life-long struggles with migraines.

A migraine is a headache that can cause severe throbbing pain or a pulsing sensation, usually on one side of the head. It's often accompanied by nausea, vomiting, and extreme sensitivity to light and sound. Migraine attacks can last for hours to days, and the pain can be so severe that it interferes with your daily activities.

For some people, a warning symptom known as an aura occurs before or with the headache. An aura can include visual disturbances, such as flashes of light or blind spots, or other disturbances, such as tingling on one side of the face or in an arm or leg and difficulty speaking.

Medications can help prevent some migraines and make them less painful. The right medicines, combined with self-help remedies and lifestyle changes, might help. (Credits: Mayo Clinic)

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Bacteria called group B Streptococcus (group B strep, GBS) commonly live in people’s gastrointestinal and genital tracts. The gastrointestinal tract is the part of the body that digests food and includes the stomach and intestines. The genital tract is the part of the body involved in reproduction and includes the vagina in women. Most of the time the bacteria are not harmful and do not make people feel sick or have any symptoms. Sometimes the bacteria invade the body and cause certain infections, which are known as GBS disease.

GBS bacteria can cause many types of infections:

Bacteremia (bloodstream infection) and sepsis (the body’s extreme response to an infection)
Bone and joint infections
Meningitis (infection of the tissue covering the brain and spinal cord)
Pneumonia (lung infection)
Skin and soft-tissue infections

GBS most commonly causes bacteremia, sepsis, pneumonia, and meningitis in newborns. It is very uncommon for GBS to cause meningitis in adults. (CDC)

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Incontinence refers to the involuntary leakage of urine (urinary incontinence) or feces (bowel incontinence), a common problem that can significantly impact quality of life. Urinary Incontinence: * Definition: Urinary incontinence is the accidental loss of urine. * Types: + Stress incontinence: Leakage during physical activity or when the bladder is under pressure (coughing, sneezing, laughing). + Urge incontinence: A strong, sudden urge to urinate that you can't control, leading to leakage. + Overflow incontinence: Leakage due to the bladder not emptying completely, leading to frequent leaking. + Mixed incontinence: A combination of stress and urge incontinence * Causes: Weak bladder muscles, overactive bladder, urinary tract infections, and certain medical conditions. * Treatment: Can include lifestyle changes, pelvic floor exercises, medications, and in some cases, surgery.

Bowel Incontinence: * Definition: Bowel incontinence, also called fecal incontinence, is the unintentional leakage of stool. * Causes: Muscle damage or weakness, nerve damage, diarrhea, constipation, and certain medical conditions. * Treatment: Can include dietary changes, medications, and in some cases, surgery.

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Winter sports are thrilling and enjoyable, but they come with unique risks that require careful preparation and safety measures. Activities such as skiing, snowboarding, ice skating, and sledding expose participants to hazards like icy conditions, extreme cold, and potential collisions. Wearing appropriate protective gear, such as helmets, padded clothing, and eye protection, can significantly reduce the risk of injury. Additionally, dressing in moisture-wicking and layered clothing helps maintain body warmth and prevent frostbite or hypothermia. It is also crucial to stay hydrated, as cold weather can mask dehydration, leading to fatigue and impaired judgment.

Beyond proper attire and gear, choosing the right location for winter activities plays a vital role in safety. Skiers and snowboarders should stay on marked trails and follow posted safety signs, while ice skaters should use designated rinks rather than unsafe, natural bodies of water. Supervision is essential, especially for children, as they may not recognize potential dangers. Activities like ice fishing and snow fort building also require special precautions, such as checking ice thickness and avoiding enclosed snow structures that could collapse. By following these guidelines, individuals can enjoy winter sports safely while minimizing the risk of accidents and injuries.

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This week we discuss vectors in a hotter world.

Vector-borne diseases, which are transmitted by hematophagous arthropods such as mosquitoes, ticks, and sandflies, pose a significant burden on global public health. These diseases disproportionately affect populations in tropical and subtropical regions, where environmental conditions favor the survival and proliferation of vectors. Given that vectors are ectothermic organisms, their life cycles, reproduction, survival rates, and geographic distribution are heavily influenced by climate variables such as temperature, rainfall, and humidity. Consequently, changes in climate patterns can have profound effects on the transmission dynamics of vector-borne diseases, altering their geographic spread and intensity.

Rising global temperatures have led to the expansion of vector habitats into previously unsuitable regions, including temperate zones. Warmer climates accelerate the development of many vectors and pathogens, reducing the extrinsic incubation period of viruses such as dengue, Zika, and chikungunya. Additionally, increased temperatures can extend the breeding season of mosquitoes like Aedes aegypti and Anopheles species, enhancing their capacity to transmit diseases such as malaria. Conversely, extreme heat events may reduce vector survival in some regions, leading to localized declines in transmission.

Changes in precipitation patterns also play a crucial role in shaping vector distribution. Heavy rainfall events can create new breeding sites for mosquitoes by increasing the availability of stagnant water, while drought conditions may drive vectors closer to human settlements in search of water sources. In particular, shifts in rainfall patterns have been linked to outbreaks of malaria, dengue, and West Nile virus in various parts of the world. Increased humidity can further facilitate the survival of certain pathogens within vectors, enhancing their ability to transmit infections.

Beyond climate variables, other anthropogenic factors contribute to the spread of vector-borne diseases. Land use changes, such as deforestation and urbanization, have disrupted natural ecosystems, bringing vectors and humans into closer contact. For example, deforestation in the Amazon has been associated with increased malaria transmission due to the creation of new breeding sites for Anopheles mosquitoes. Similarly, expanding urban populations with inadequate water management systems provide ideal conditions for the proliferation of Aedes mosquitoes, driving the rise in dengue and chikungunya cases.

Globalization and human mobility further compound the issue by facilitating the movement of infected individuals and vectors across borders. Increased travel and trade have contributed to the introduction and establishment of vector-borne diseases in regions where they were previously rare. For instance, the spread of Aedes albopictus, a competent vector for dengue and chikungunya, has been linked to international trade in used tires and lucky bamboo plants, which serve as breeding grounds during transport.

The multifaceted relationship between climate change and vector-borne diseases presents a challenge for public health interventions. While climate factors influence vector dynamics, their impact is often modulated by socio-economic conditions, infrastructure, and public health responses. To mitigate the growing threat of vector-borne diseases, an integrated approach is necessary—combining climate adaptation strategies, vector control measures, surveillance programs, and community engagement.

Recent research underscores the importance of predictive modeling to anticipate outbreaks and inform public health policies. Advances in remote sensing, artificial intelligence, and climate modeling are enabling researchers to identify high-risk areas and implement targeted interventions. Strengthening early warning systems and investing in sustainable vector control strategies, such as genetically modified mosquitoes and Wolbachia-infected mosquito programs, offer promising avenues for reducing disease transmission.

In conclusion, while climate change is reshaping the global landscape of vector-borne diseases, its effects are complex and intertwined with other environmental and societal factors. Understanding these dynamics is crucial for developing proactive strategies to mitigate the risks associated with the redistribution of vectors and the spread of diseases worldwide. By integrating climate science, epidemiology, and public health measures, we can better prepare for emerging threats and protect vulnerable populations from the growing impact of vector-borne diseases.

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This week we discuss the basics about a topic several of our guests have spoken about- Ehlers Danlos Syndrome or EDS.

Ehlers-Danlos syndrome is a group of inherited disorders that affect your connective tissues — primarily your skin, joints and blood vessel walls. Connective tissue is a complex mixture of proteins and other substances that provide strength and elasticity to the underlying structures in your body.

The Ehlers-Danlos syndromes received a major overhaul in 2017 and this is what we now know:

EDS are heritable connective tissue disorders affecting the quality of collagen in every part of the body.
There are now 13 recognized subtypes of EDS, 12 of which are genuinely rare and have the aberrant gene identified.
Hypermobile EDS (hEDS) and hypermobility spectrum disorder (HSD) is by far the most common type; these conditions are part of a spectrum and the distinction is hoped to be useful for research, but is otherwise academic.
hEDS/HSD is a multi-system disorder which can have a marked impact on health and which may help us to explain apparently mysterious multiple symptoms.
Don’t let the changing terminology confuse you. 3.4% of the population have generalized joint hypermobility and chronic widespread pain (a proxy for the now obsolete diagnosis of joint hypermobility syndrome (JHS).
Patients who in the past received a diagnosis of JHS (or Benign JHS), EDS-Hypermobility Type or EDS Type III would now be categorized as having hEDS or HSD.
“If you can’t connect the issues, think connective tissues” Non-specific and medically unexplained symptoms are usually real and should not be dismissed It can be easy to make a big difference to the quality of life of some of your most complex patients with a few simple and inexpensive measures, but the journey starts with recognition.
The median time from symptom onset to seeking a GP opinion is 2 years and the median time to diagnosis 10 years. If we make an early diagnosis and manage the conditions appropriately, there may be potential to reduce long term disability which can occur from EDS.
Enquire about family members; these are hereditary disorders of connective tissue so positive family histories are common. Although no gene has yet been identified, hEDS is primarily of autosomal dominant inheritance.
Children can present with symptoms of hEDS/HSD, including abdominal symptoms or growing pains. They may also present with neurodevelopmental disorders such as hyperactivity, inattention, dyspraxia, autistic spectrum disorder, sleep, and food issues, emotional problems, hypersensitivity and anxiety.
A low Beighton score does not exclude hEDS/HSD,. Patients stiffen with age so their Beighton score may decrease, although pain may worsen. The extent of multi-system symptoms is not related to the Beighton score.
Consider co-existing conditions; In recent years, we have begun to understand more about associated or co-morbid conditions which are frequently found in people with hEDS, including autonomic dysfunction (postural tachycardia syndrome (PoTS) and symptomatic low blood pressure), mast cell activation syndrome (MCAS) and gastrointestinal dysfunction.

(Credits: GPTOOLKIT)

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This week we discuss "Food is Medicine". The concept of "food is medicine" refers to the idea that certain foods and dietary patterns can play a significant role in promoting health, preventing disease, and managing chronic conditions.

This concept is based on the notion that food is not only a source of energy and nutrients but also a powerful tool for influencing our physiological and biochemical processes. Access to affordable, nutritious food is crucial for good health, yet many Americans, particularly in under-resourced communities, face barriers. The result? A $1.1 trillion healthcare bill for diet-related diseases — equal to all the money we currently spend on food itself.

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Our guest today is Evelyn Gamble. Evelyn is a dedicated healthcare worker and passionate heart disease advocate. With a deep commitment to improving health outcomes, Evelyn uses her personal and professional experiences to raise awareness about heart health, particularly for young adults. As a strong voice for change, she aims to inspire others to take proactive steps in managing their heart health and to advocate for better care and resources for those affected by heart disease. Definition: A heart arrhythmia, also known as a cardiac arrhythmia, is an abnormal rhythm of the heart. It occurs when the electrical impulses that control the heart's contractions do not function properly. Causes: Heart arrhythmias can be caused by a wide range of factors, including: + Heart disease (e.g., coronary artery disease, heart failure) + Electrolyte imbalances (e.g., low potassium or magnesium) + Certain medications (e.g., stimulants, caffeine)

Thyroid disorders
Damage to the Vagus Nerve
Stress
Genetics

Types: There are many different types of heart arrhythmias, which can be classified based on the rate and rhythm of the heart: * Tachycardia: A rapid heart rate (over 100 beats per minute)

Bradycardia: A slow heart rate (under 60 beats per minute)
Atrial fibrillation: A quivering or irregular rhythm of the upper chambers of the heart (atria)
Ventricular fibrillation: A life-threatening rhythm where the lower chambers of the heart (ventricles) contract irregularly and chaotically
Premature beats: Extra heartbeats that occur early in the rhythm

Symptoms: Some people with heart arrhythmias may not experience any symptoms. Others may have symptoms such as: Palpitations (feeling like the heart is racing or fluttering), Chest pain or discomfort, Dizziness or lightheadedness, Fainting, and Shortness of breath. Diagnosis and Treatment: To diagnose a heart arrhythmia, your doctor will likely perform a physical exam, ask about your medical history, and take an electrocardiogram (ECG). Treatment options depend on the type and severity of the arrhythmia and may include: * Medications (e.g., beta-blockers, antiarrhythmics)

Lifestyle changes (e.g., exercise, stress management)
Surgery (e.g., ablation procedure)
Implantable devices (e.g., pacemakers, defibrillators)

Outlook: The outlook for people with heart arrhythmias varies depending on the underlying cause and severity of the condition.

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This week's episode we will discuss the resurgence of TB/ Tuberculosis. TB is a treatable and curable disease. Active, drug-susceptible TB disease is treated with a standard 6-month course of 4 antimicrobial drugs that are provided with information and support to the patient by a health worker or trained volunteer. Without such support, treatment adherence is more difficult.

Since 2000, an estimated 66 million lives were saved through TB diagnosis and treatment. (credits: WHO)

A total of 1.5 million people died from TB in 2020 (including 214 000 people with HIV). Worldwide, TB is the 13th leading cause of death and the second leading infectious killer after COVID-19 (above HIV/AIDS).
In 2020, an estimated 10 million people fell ill with tuberculosis (TB) worldwide. 5.6 million men, 3.3 million women and 1.1 million children. TB is present in all countries and age groups. But TB is curable and preventable.
In 2020, 1.1 million children fell ill with TB globally. Child and adolescent TB is often overlooked by health providers and can be difficult to diagnose and treat.
In 2020, the 30 high TB burden countries accounted for 86% of new TB cases. Eight countries account for two thirds of the total, with India leading the count, followed by China, Indonesia, the Philippines, Pakistan, Nigeria, Bangladesh and South Africa.
Multidrug-resistant TB (MDR-TB) remains a public health crisis and a health security threat. Only about one in three people with drug resistant TB accessed treatment in 2020.
Globally, TB incidence is falling at about 2% per year and between 2015 and 2020 the cumulative reduction was 11%. This was over half way to the End TB Strategy milestone of 20% reduction between 2015 and 2020.
An estimated 66 million lives were saved through TB diagnosis and treatment between 2000 and 2020.
Globally, close to one in two TB-affected households face costs higher than 20% of their household income, according to latest national TB patient cost survey data. The world did not reach the milestone of 0% TB patients and their households facing catastrophic costs as a result of TB disease by 2020.
By 2022, US$ 13 billion is needed annually for TB prevention, diagnosis, treatment and care to achieve the global target agreed at the UN high level-meeting on TB in 2018.
Funding in low- and middle-income countries (LMICs) that account for 98% of reported TB cases falls far short of what is needed. Spending in 2020 amounted to US$ 5.3 billion less than half (41%) of the global target.
There was an 8.7% decline in spending between 2019 and 2020 (from US$ 5.8 billion to US$ 5.3 billion), with TB funding in 2020 back to the level of 2016.
Ending the TB epidemic by 2030 is among the health targets of the United Nations Sustainable Development Goals (SDGs).

Tuberculosis (TB) is caused by bacteria (Mycobacterium tuberculosis) that most often affect the lungs. Tuberculosis is curable and preventable.

TB is spread from person to person through the air. When people with lung TB cough, sneeze or spit, they propel the TB germs into the air. A person needs to inhale only a few of these germs to become infected.

About one-quarter of the world's population has a TB infection, which means people have been infected by TB bacteria but are not (yet) ill with the disease and cannot transmit it.

People infected with TB bacteria have a 5–10% lifetime risk of falling ill with TB. Those with compromised immune systems, such as people living with HIV, malnutrition or diabetes, or people who use tobacco, have a higher risk of falling ill.

When a person develops active TB disease, the symptoms (such as cough, fever, night sweats, or weight loss) may be mild for many months. This can lead to delays in seeking care, and results in transmission of the bacteria to others. People with active TB can infect 5–15 other people through close contact over the course of a year. Without proper treatment, 45% of HIV-negative people with TB on average and nearly all HIV-positive people with TB will die.

Who is most at risk? Tuberculosis mostly affects adults in their most productive years. However, all age groups are at risk. Over 95% of cases and deaths are in developing countries.

People who are infected with HIV are 18 times more likely to develop active TB (see TB and HIV section below). The risk of active TB is also greater in persons suffering from other conditions that impair the immune system. People with undernutrition are 3 times more at risk. Globally in 2020, there were 1.9 million new TB cases that were attributable to undernutrition.

Alcohol use disorder and tobacco smoking increase the risk of TB disease by a factor of 3.3 and 1.6, respectively. In 2020, 0.74 million new TB cases worldwide were attributable to alcohol use disorder and 0.73 million were attributable to smoking.

Global impact of TB TB occurs in every part of the world. In 2020, the largest number of new TB cases occurred in the WHO South-East Asian Region, with 43% of new cases, followed by the WHO African Region, with 25% of new cases and the WHO Western Pacific with 18%.

In 2020, 86% of new TB cases occurred in the 30 high TB burden countries. Eight countries accounted for two thirds of the new TB cases: India, China, Indonesia, the Philippines, Pakistan, Nigeria, Bangladesh and South Africa.

Symptoms and diagnosis Common symptoms of active lung TB are cough with sputum and blood at times, chest pains, weakness, weight loss, fever and night sweats. WHO recommends the use of rapid molecular diagnostic tests as the initial diagnostic test in all persons with signs and symptoms of TB as they have high diagnostic accuracy and will lead to major improvements in the early detection of TB and drug-resistant TB. Rapid tests recommended by WHO are the Xpert MTB/RIF Ultra and Truenat assays.

Diagnosing multidrug-resistant and other resistant forms of TB (see Multidrug-resistant TB section below) as well as HIV-associated TB can be complex and expensive.

Tuberculosis is particularly difficult to diagnose in children.

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Our guest today is a Physical Therapist that specializes in Sciatica.

Dean Volk, MPT, and owner of Sciatica Relief Now, has spent over 33 years revolutionizing sciatica treatment. After owning three successful clinics and a cash concierge practice and working with professional athletes, Volk transitioned to a virtual model in 2018, turning this side hustle into a full-time operation in 2021. Now based in Santa Monica, CA, Dean and his team of coaches provide virtual consultations and coaching to clients worldwide, helping them live their lives to the fullest.

The cornerstone of Sciatica Relief Now’s success is Volk’s unique approach, which operates 180 degrees opposite to traditional physical therapy and chiropractic methods. Unlike many standard treatments that rely on generic exercises, stretching, or painful adjustments, Sciatica Relief Now focuses on finding the right motion for each individual’s body. This personalized approach addresses the root causes of their pain.

Dean Volk explains, “We believe that the right motion is lotion for the body. Our approach does not involve stretching or digging into the painful side. Instead, we teach our clients to view their sciatica as a wound that needs to heal. By helping them balance out their bodies and reduce compensation, we put their bodies in an optimal position to heal.”

Sciatica Relief Now’s 8-week programs, offered through both group and one-on-one coaching, have helped clients return to activities they once thought were impossible. From professional rowing and marathon running to everyday tasks like gardening and walking, clients are finding long-lasting relief and regaining their quality of life.

One of the key differentiators of Sciatica Relief Now is its 100% virtual model. This allows clients to receive expert guidance and support from the comfort of their own homes, eliminating the need for time-consuming travel and waiting room visits. Dean Volk’s team offers both group coaching and personalized one-on-one sessions, complemented by their DWY (Do With You) Online course, which empowers clients to take control of their own healing process.

By focusing on common-sense solutions and teaching clients how to heal their bodies naturally, Volk and his team are making a significant impact on the lives of those suffering from sciatica.

Dean Volk’s dedication to his craft and his clients is evident in his continuous efforts to refine and perfect his treatment protocols. Over the last 16 years, he has diligently worked on his approach. His commitment to education and empowerment is further demonstrated through his extensive experience before he sold his clinics in 2020.

With a focus on simplicity and effectiveness, Sciatica Relief Now’s methods are designed to be accessible and understandable for all clients. The virtual nature of the service also means that clients from anywhere in the world can benefit from Volk’s expertise and guidance.

For those interested in exploring a new, effective approach to sciatica relief, Sciatica Relief Now offers a promising solution. By thinking differently about sciatica treatment and focusing on the right motion for each individual, Dean Volk and his team are helping people reclaim their lives and move forward without the fear of debilitating pain.

For more information, visit Sciatica Relief Now, follow @SciaticaReliefNow, and check out the YouTube Channel.

Contact Information: Dean Volk Email: info@sciaticareliefnow.net

About Sciatica Relief Now: Sciatica Relief Now helps sciatica sufferers who have failed multiple treatment approaches find relief and regain their lives without medications, injections, or surgery. Founded by Dean Volk, MPT, the company offers a unique, 100% virtual approach that teaches clients how to heal their bodies naturally.

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Myasthenia gravis is a chronic neuromuscular disease that causes weakness in the voluntary muscles. Voluntary muscles include muscles that connect to a person’s bones, muscles in the face, throat, and diaphragm. They contract to move the arms and legs and are essential for breathing, swallowing and facial movements. Myasthenia gravis is an autoimmune disease, which means that the body’s defense system mistakenly attacks healthy cells or proteins needed for normal functioning.

The onset of the disorder may be sudden. Symptoms may not be immediately recognized as myasthenia gravis. The degree of muscle weakness involved varies greatly among individuals.

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This week we discuss blood clots

A blood clot is a clump of blood that has changed from a liquid to a gel-like or semisolid state. Clotting is a necessary process that can help prevent excessive blood loss when you have a cut, for example.

Thrombosis is when a blood clot forms and reduces blood flow.

There are two types:

Arterial thrombosis occurs when a blood clot forms in an artery.
Venous thrombosis occurs when a blood clot forms in a vein.

When a clot forms inside one of your veins, it may dissolve on its own.

However, sometimes a clot doesn’t dissolve on its own, or part of it breaks off and travels elsewhere in your circulatory system. When this happens, the blood clot may get stuck elsewhere and restrict blood flow, known as embolism.

These situations can be very dangerous and even life threatening.

According to the Centers for Disease Control and Prevention (CDC), 1 in 2 people don’t experience any symptoms when they have a deep venous blood clot.

When symptoms do appear, it’s important to get immediate medical attention.

Medical emergency

A blood clot may be a medical emergency and life threatening if left untreated.

Call 911 or go to the nearest emergency room immediately if you or someone you’re with experiences symptoms of a serious blood clot, such as:

sudden shortness of breath
chest pressure
difficulty breathing, seeing, or speaking

Call a doctor or seek medical attention if you experience throbbing, swelling, and tenderness in one body part.

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This week we discuss hearing loss. A person who is not able to hear as well as someone with normal hearing – hearing thresholds of 20 dB or better in both ears – is said to have hearing loss. Hearing loss may be mild, moderate, severe or profound. It can affect one ear or both ears and leads to difficulty in hearing conversational speech or loud sounds.

Hard of hearing refers to people with hearing loss ranging from mild to severe. People who are hard of hearing usually communicate through spoken language and can benefit from hearing aids, cochlear implants, and other assistive devices as well as captioning.

Hearing loss that comes on little by little as you age, also known as presbycusis, is common. More than half the people in the United States older than age 75 have some age-related hearing loss.

There are three types of hearing loss:

Conductive, which involves the outer or middle ear.
Sensorineural, which involves the inner ear.
Mixed, which is a mix of the two.

Aging and being around loud noises both can cause hearing loss. Other factors, such as too much earwax, can lower how well ears work for a time.

Deaf people mostly have profound hearing loss, which implies very little or no hearing. They often use sign language for communication. We will not cover deafness during this episode

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In this episode we will discuss food safety at the holidays. From prep to serving there are important tips to remember to ensure a toxin free meal for everyone!

Parties, family dinners, and other gatherings where food is served are all part of the holiday cheer. But the joy can change to misery if food makes you or others ill.

Typical symptoms of foodborne illness, also known as food poisoning, are vomiting, diarrhea, and flu-like symptoms, which can start anywhere from hours to days after contaminated food or drinks are consumed.

The symptoms usually are not long-lasting in healthy people — a few hours or a few days — and usually go away without medical treatment. But foodborne illness can be severe and even life-threatening to anyone, especially those most at risk:

older adults
infants and young children
pregnant people
people with diabetes, HIV/AIDS, cancer, or any condition that weakens their immune system
people who take medicines that suppress the immune system; for example, some medicines for lupus, psoriasis and rheumatoid arthritis

The good news is that practicing four basic food safety measures can help prevent foodborne illness.

Clean: The first rule of safe food preparation in the home is to keep everything clean.
Wash hands with warm water and soap for 20 seconds before and after handling any food. To help you remember, it takes about 20 seconds to sing "Happy Birthday" two times.
Wash food-contact surfaces (cutting boards, dishes, utensils, countertops) with hot, soapy water after preparing each food item and before going on to the next item.
Rinse fruits and vegetables thoroughly under cool running water and use a produce brush to remove surface dirt.
Do not rinse raw meat and poultry before cooking. Washing these foods makes it more likely for bacteria to spread to areas around the sink and countertops.

Separate: Don't give bacteria the opportunity to spread from one food to another (cross-contamination).
Keep raw eggs, meat, poultry, seafood, and their juices away from foods that won't be cooked. Take this precaution while shopping in the store, when storing in the refrigerator at home, and while preparing meals.
Consider using one cutting board only for foods that will be cooked (such as raw meat, poultry, and seafood) and another one for foods that will not be cooked (such as raw fruits and vegetables).
Keep fruits and vegetables that will be eaten raw separate from other foods such as raw meat, poultry or seafood — and from kitchen utensils used for those products.
Do not put cooked meat or other food that is ready to eat on an unwashed plate that has held any raw eggs, meat, poultry, seafood, or their juices.

Cook: Food is safely cooked when it reaches a high enough internal temperature to kill harmful bacteria.
Color is not a reliable indicator of doneness. Use a food thermometer to make sure meat, poultry, and fish are cooked to a safe internal temperature. To check a turkey for safety, insert a food thermometer into the innermost part of the thigh and wing and the thickest part of the breast. The turkey is safe when the temperature reaches 165ºF. If the turkey is stuffed, the temperature of the stuffing should be 165ºF. (Please read on for more pointers on stuffing.)
Bring sauces, soups, and gravies to a rolling boil when reheating.
Cook eggs until the yolk and white are firm. When making your own eggnog or other recipe calling for raw eggs, use pasteurized shell eggs, liquid or frozen pasteurized egg products, or powdered egg whites.
Don't eat uncooked cookie dough, which may contain raw eggs and raw flour.

Chill: Refrigerate foods quickly because harmful bacteria grow rapidly at room temperature.
Refrigerate leftovers and takeout foods — and any type of food that should be refrigerated — within two hours. That includes pumpkin pie!
Set your refrigerator at or below 40ºF and the freezer at 0ºF. Check both periodically with an appliance thermometer.
Never defrost food at room temperature. Food can be defrosted safely in the refrigerator, under cold running water, or in the microwave. Food thawed in cold water or in the microwave should be cooked immediately.
Allow the correct amount of time to properly thaw food. For example, a 20-pound turkey needs four to five days to thaw completely when thawed in the refrigerator.
Don't taste food that looks or smells questionable. A good rule to follow is, when in doubt, throw it out.
Leftovers should be used within three to four days.

Bonus Tip: Use Care with Stuffing! * Whether it is cooked inside or outside the bird, all stuffing and dressing must be cooked to a minimum temperature of 165ºF. For optimum safety, cooking your stuffing in a casserole dish is recommended. * Stuffing should be prepared and stuffed into the turkey immediately before it's placed in the oven. * Mix wet and dry ingredients for the stuffing separately and combine just before using. * The turkey should be stuffed loosely, about 3/4 cup stuffing per pound of turkey. * Any extra stuffing should be baked in a greased casserole dish.

(CREDITS: FDA)

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This week we discuss Abdominal adhesions. These are bands of scar tissue that form between abdominal tissues and organs. Like the name suggests, the tissue can cause your organs to “adhere,” or stick together. Adhesions commonly form after abdominal surgery. Typically, you don’t need treatment unless they cause a complication, like a small bowel obstruction.

Abdominal adhesions are bands of scar tissue that form between the organs in your belly and pelvis. Mainly, they form between loops of your small intestine. They can also form between an organ and the wall of your abdominal cavity.

Your abdominal cavity contains your:

Digestive system, including your stomach and intestines.
Female reproductive organs.
Kidneys and adrenal glands.
Liver.
Pancreas.
Spleen.

Adhesions occur when there’s injury or inflammation in your abdomen. They can even form from normal handling during surgery. In fact, they’re most common after abdominal surgery. As a natural part of healing, scar tissue forms that can cause tissues to stiffen and stick together (“adhere”).

How common are abdominal adhesions? Abdominal adhesions are the most common consequence of having surgery on your abdomen. The majority of people develop adhesions after abdominal surgery. But most people don’t need treatment unless they’re experiencing symptoms.

Adhesions are also the most common cause of a small bowel obstruction. A bowel obstruction is a medical emergency that involves complete or partial blockage in your intestines.

(credits Cleveland Clinic)

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The first human vaccines against viruses were based using weaker or attenuated viruses to generate immunity. The smallpox vaccine used cowpox, a poxvirus that was similar enough to smallpox to protect against it but usually didn’t cause serious illness. Rabies was the first virus attenuated in a lab to create a vaccine for humans.

Vaccines are made using several different processes. They may contain live viruses that have been attenuated (weakened or altered so as not to cause illness); inactivated or killed organisms or viruses; inactivated toxins (for bacterial diseases where toxins generated by the bacteria, and not the bacteria themselves, cause illness); or merely segments of the pathogen (this includes both subunit and conjugate vaccines).

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This week we will discuss possible treatment methods for AFIB.

Atrial fibrillation (AFib) is a common type of irregular heart rhythm (arrhythmia) that occurs when the upper chambers of the heart (atria) beat chaotically and out of sync with the lower chambers (ventricles). This can lead to a variety of symptoms, including:

Palpitations (a feeling of a racing or irregular heartbeat)
Fatigue
Shortness of breath
Dizziness or lightheadedness
Chest discomfort

AFib can increase the risk of blood clots, stroke, heart failure, and other heart-related complications.

Treatment Options for AFib Management of AFib focuses on controlling the heart rate and rhythm, preventing blood clots, and addressing underlying conditions contributing to the arrhythmia. The choice of treatment depends on the individual's symptoms, overall health, and risk factors.

Medications Medications are often the first line of treatment for AFib. These include:
Rate-Control Medications
- Aim to slow the heart rate to a normal range.
- Common drugs: Beta-blockers (e.g., metoprolol), calcium channel blockers (e.g., diltiazem, verapamil), and digoxin.
- Rhythm-Control Medications
- Help restore and maintain a normal heart rhythm.
- Common drugs: Antiarrhythmics like amiodarone, flecainide, or sotalol.
- Anticoagulants (Blood Thinners)
- Reduce the risk of stroke by preventing blood clots.
- Examples: Warfarin, direct oral anticoagulants (DOACs) like apixaban (Eliquis) or rivaroxaban (Xarelto).
Ablation Therapy Ablation is a minimally invasive procedure aimed at correcting the electrical signals causing AFib. It is typically recommended for individuals who:
Do not respond to or cannot tolerate medications.
Have recurrent or persistent AFib that significantly impacts quality of life.

Types of ablation:

Catheter Ablation
- Uses thin tubes (catheters) inserted into blood vessels to deliver energy (radiofrequency or cryotherapy) to destroy small areas of heart tissue causing abnormal electrical signals.
- Surgical Ablation (Maze Procedure)
- Often performed during open-heart surgery for other conditions, creating scar tissue to block abnormal signals.

Both options have high success rates, but catheter ablation is more commonly performed due to its minimally invasive nature.

Choosing the Right Treatment Deciding between medications or ablation depends on factors such as:

The severity and frequency of symptoms.
The presence of other medical conditions.
Patient preference and lifestyle.

Consultation with a cardiologist or electrophysiologist is crucial to tailor treatment to the individual’s needs.

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This week we are talking about the Vagus Nerve. The vagus nerve (10th cranial nerve) is a critical part of the autonomic nervous system, responsible for regulating vital functions such as heart rate, digestion, and respiration. It extends from the brainstem (medulla oblongata) through the neck and chest to the abdomen, with motor and sensory fibers allowing communication between the brain and organs. The vagus nerve has two branches—left and right—which overlap in regulating autonomic functions.

Functions and Importance * Cardiac and Pulmonary Regulation: The left vagus nerve primarily innervates the heart, while the right focuses on the lungs, though both contribute to overall regulation. * Digestive System Support: It promotes digestion by increasing blood flow to the gastrointestinal tract and stimulating enzyme release. * Mental Health and Inflammation: The vagus nerve influences mood, anxiety, and stress by connecting to brain areas that regulate emotions. It also modulates inflammation, reducing pro-inflammatory molecules. * Enteric Nervous System Connection: Acting as a bridge between the brain and the "second brain" in the gut, the vagus nerve ensures coordination of digestive processes.

Vulnerability to Injury Due to its extensive pathway, the vagus nerve is prone to injury from trauma, surgery, infections, tumors, or certain medical conditions. Common causes include:

Trauma: Accidents, falls, or sports injuries affecting the neck or chest.
Surgical Complications: Procedures in the neck, chest, or abdomen can unintentionally damage the nerve.
Medical Conditions: Disorders such as gastric ulcers, reflux, or tumors may affect the nerve. Infections like Lyme disease or meningitis are also potential causes.
Idiopathic Cases: Sometimes, the cause of vagus nerve injury remains unknown, requiring further investigation.

Symptoms of Vagus Nerve Injury Injury symptoms depend on the severity and location of damage and may include:

Cardiovascular: Rapid or irregular heartbeat, blood pressure changes.
Digestive: Bloating, constipation, diarrhea, or difficulty swallowing.
Voice and Throat: Hoarseness, voice changes.
General: Anxiety, depression, or excessive sweating.

Diagnosis and Management Diagnosing vagus nerve damage involves imaging, nerve conduction studies, and blood tests to assess functionality. Early detection is crucial for effective management and preventing complications. Prompt medical intervention can improve symptoms and enhance quality of life.

Understanding the vagus nerve’s anatomy and functions underscores its significance in maintaining overall health, aiding healthcare professionals in diagnosing and addressing related dysfunctions.

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Our guest this week is Christine James. Christine is a mother to two daughters, 19 and 23, a nurse of 8 ½ years and now a chronic pain patient. She was happy to take the time to speak with us in order to bring awareness to a rare and largely unknown disease: CRPS or Complex Regional Pain Syndrome.

As a nurse she worked in the fields of home health, acute medical, psych, long term care, dialysis; and has floated to many other units within hospitals. She has worked at the bedside and have also held supervisory positions. Passionate about her career as a nurse, she hopes to get well enough to work again.

In her 20’s she was diagnosed with degenerative disc disease and osteoarthritis of the spine. Over the course of many years she went through many procedures and treatments due to lumbar disc herniations to include six back surgeries- one of which resulted in permanent damage to her L-5/S-1 nerve root resulting in permanent right foot drop, and one of which was a fusion of L-5/S-1 using four screws and two rods.

After walking 10 years with foot drop and working as a nurse the instability and condition in her right ankle caused constant swelling and pain which led her to seek further treatment. It was found that her joint was arthritic and the bones were collapsing out of position. Her Achilles tendon was also found to be too tight. On March 11, 2024 she underwent a right Achilles tendon release, tendon transfer to improve foot drop. Three weeks later the symptoms of CRPS were recognized by her surgeon and she was diagnosed on April 8, 2024.

Due to her foundation of knowledge as a nurse and due to her drive to get better, she joined multiple social media platforms in search of how to find the treatment she needed and through that process she also began helping others learn about this disease.

When she is feeling healthy, she enjoys many creative hobbies, gardening, and is an avid concertgoer. She has two cats, & lives with her boyfriend in Michigan. They are currently struggling to make it through this difficult time with her health. Financial issues have become bad enough that she sold personal items, used food pantries, and started a gofundme.

She is currently active in Facebook groups and has a TikTok account that she uses to network with others that have CRPS, chronic pain, and chronic illness.

She is grateful to participate in the online community in any way to bring awareness and understanding to CRPS sufferers.

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This week we discuss the field of Functional Neurology with Dr. Alexander Zubkov. Stroke care is complex and does not stop when a patient is discharged from the hospital. As a Functional Neurologist, Dr. Zubkov offers comprehensive follow-up for Stroke care, and focus on prevention through health and wellness. According to his online presence, these are the benefits of such tailored medical care:

Benefits of Integrative Neurology and Functional Medicine
- Identify the root cause of your illness
- Decrease excessive inflammation
- Balance your brain
- Reversal of cognitive decline
- Improve your overall health
- State of the art laboratory testing
- Nutritionist evaluation
- Short and long-term health planning
- Physician-grade supplement

Dr. Zubkov believes that we are facing an epidemic of unhealthy lifestyles and environments, but there is hope for change. You have the power to make positive changes in your life, and it doesn't have to be a sacrifice of joy and fun. With one voice and one mind, we can learn to eat real food, exercise, and rest to achieve radiant health.

While crisis care is excellent in acute cases, the current model of healthcare fails in preventing and treating chronic diseases. However, since the early 90s, there has been a wealth of rock-solid studies proving that many chronic illnesses are preventable. The problem is that the abundance of information can lead to confusion, without the specific context for each individual.

Core Beliefs: Dr. Zubkov knows that each person is unique, and it's not enough to simply tell them what not to eat. By understanding their personal story and history, teaching them, and backing up strategies with proper laboratory assessments, we can make meaningful changes towards a healthier life. So don't lose hope - you have the power to improve your health and wellbeing. Dr. Zubkov founded Mind Body Neurology, PLLC to help patients to recover from neurological diseases through holistic approach.

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The winter season brings cold temperatures and severe weather conditions that create many hazards for individuals working in areas that experience these conditions. Even if you work indoors, winter weather still poses many hazards for you, such as driving into work in bad weather or walking through an icy parking lot to get to your building. It is important to recognize and address the hazards the winter season brings with it.

During extremely cold weather or winter storms, staying warm and safe can be a challenge. Winter storms can bring cold temperatures, power failures, loss of communication services, and icy roads. To keep yourself and your loved ones safe, you should know how to prepare your home and your car before a winter storm hits.

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This week we are talking once again with Dan "Dry Dock" Shockley on "Staying Healthy as a Veteran" For Veteran's Day this year we are featuring Dan because even though he has been dealt a hard blow with a hereditary colon cancer gene he is not letting that slow him down one bit! As a matter of fact he is thriving and advocating for others around the globe as a hereditary colon cancer ambassador! Here is some more about Dan:

Dan Dry Dock Shockley, retired U.S. Navy veteran; Operation Desert Storm; Enduring and Iraqi Freedom veteran and a hereditary colon cancer WARRIOR.
The U.S. based Colon Cancer Alliance featured his journey for their Veterans Day blog. The below url provided for your reading pleasure:

https://www.ccalliance.org/blog/prevention/dan-drydock-shockley-colon-cancer-warrior-forges-on

Also, in honor of Rare Cancer Day, 30 September, the NORDpod featured him as a special guest.

The below url provided for your listening pleasure:

https://open.spotify.com/episode/6cJJwWXEp34wD8ulFBXNQu?si=m6_V8YwJRwqEAWxXzTp3Cw&utm_source=native-share-menu&dl_branch=1

Additionally, he has been a regular contributor to the UK based Rare Revolution team. They recently invited me to be part of their National Patient Advocate Day campaign. My input can be viewed on Instagram:

https://www.instagram.com/tv/CSwmNDwjuLQ/?utm_medium=copy_link

In closing, here's his latest article which was featured by the Montreal based, RareDIG Organization.

https://www.raredigmcgill.com/HORD/Season-Four

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In this episode we will discuss Halloween Safety during COVID

Fall celebrations like Halloween and Harvest Day are fun times for children, who at one time could dress up in costumes, enjoy parties, and eat yummy treats.

These celebrations also provide a chance to give out healthy snacks, get physical activity, and focus on safety.

Check out these tips to help make the festivities fun and safe for trick-or-treaters and some ideas to replace typical parties during these uncommonly scary times.

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Silicosis is a lung disease caused by inhaling tiny crystalline particles of silica, or silicon dioxide, often linked to work environments like mining, construction, stonework, and sandblasting. The disease leads to symptoms such as coughing, inflammation, and fibrosis (scarring) and is classified under pneumoconioses, a group of lung conditions caused by inhaling dust. Silicosis can be chronic, developing over more than 10 years of exposure; subacute, occurring in two to five years with heavier exposure; or acute, which can happen within months of intense exposure. Although silicosis is irreversible and has no cure, treatments are available to manage symptoms.

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Jamie Holmes-Ward was born with a rare condition known as V.A.T.E.R Syndrome. The Cleveland Clinic says: VATER syndrome, also known as VACTERL association, is a complex condition that affects several parts of the body. VATER (VACTERL) is an acronym that stands for the affected parts of the body including the vertebrae, anus, heart, trachea, esophagus, kidney and limbs. Treatment is symptomatic and unique for each person diagnosed with the condition. Jamie is here to tell her story of overcoming obstacles with grace and creating a nonprofit to help children lift their spirits as they deal serious medical conditions. Jamie is a dynamo of energy and strength turning an otherwise bleak world into one with rainbows, fairy princesses and smiles. We hope you will help her reach even more children through donations to her 501(c)(3)

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This week we discuss bullying with our guest Chelsey Peat. Chelsey is an advocate for those with facial differences due to Sturge Weber Syndrome. A person that looks different is a prime target for bullies. Bullying is often seen as a schoolyard issue, but its impact on mental health extends into adulthood. Bullied children face increased risks of anxiety, depression, and low self-esteem, with effects that can last a lifetime.

Impact of Bullying

Bullying occurs when a child uses physical or social power to hurt another. In the short term, it can cause anxiety, depression, low self-esteem, sleep issues, and suicidal thoughts. Long-term, bullying victims are at higher risk for anxiety disorders, depression, loneliness, and school avoidance. Bullies themselves may develop antisocial behaviors, and those who both bully and are bullied are at the highest risk for mental health issues like anxiety, depression, and substance abuse.

Responding to Bullying

Bullying can be physical, verbal, social, or virtual. Adults may not always witness it, but they can often see its effects, like a child avoiding school or friends. If you suspect bullying, don’t wait—talk to the child. Ask about their experiences and explore ways to help them feel safe. Encourage positive coping strategies, whether it's standing up for themselves or finding a trusted friend.

Bullying Prevention Strategies

Schools are required to have anti-bullying programs, yet many children still experience bullying. Punishment-based approaches are ineffective. Instead, fostering positive school environments and teaching social-emotional skills can help reduce bullying. Open communication at home is key; children need to know they can talk to trusted adults when they need help.

Conclusion

By supporting children emotionally, adults can help prevent bullying and its long-lasting effects on mental health.

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This week we will discuss the most common type of Ehlers-Danlos syndrome – the hypermobile type (hEDS, formerly also described as EDS type III or joint hypermobility syndrome), this is the type that most commonly presents to gastroenterology services.

As connective tissue is present throughout the body, many different structures around the body including the digestive tract can be affected by EDS. Connective tissue is present in the digestive tract and is essential to the passive mechanical movements needed to complete digestion. It has been suggested that any abnormalities in the connective tissues in the digestive tract are likely to alter the way in which it moves, which could contribute to the range of symptoms experienced by people with hEDS. Connective tissue is also present around the nerves of the digestive tract and abnormalities of this can potentially make the gut more sensitive. It is important to remember that whilst differences in the digestive tract function are likely to be present in hEDS, as yet diagnostic biomarkers have not been identified and more research is needed to better understand the nature and impact of connective tissue within the digestive system, particularly in the other subtypes of EDS.

The digestive tract starts at the mouth, and ends at the anus. Many aspects of the digestive tract can potentially be affected, including both the upper digestive tract (oesophagus, stomach and duodenum) as well as the lower digestive tract (small intestine, large intestine, colon and rectum). We frequently see patients who mainly have symptoms related to either the upper or the lower digestive tract only, and some research studies have found that a significant proportion of people with hEDS experience some kind of gastrointestinal symptoms.

What sort of gut problems can occur? The type, frequency and severity of digestive symptoms can vary greatly from person to person as everyone with hEDS is different. The most frequently reported problems affecting the upper digestive tract are acid reflux and chronic/recurrent indigestion with pain or discomfort and early fullness after meals. The lower digestive tract can present problems such as constipation, abdominal pain, bloating, diarrhoea and a feeling of general abdominal discomfort. Nausea and vomiting can occur alongside any of the symptoms described above.

Delayed gastric emptying / dysmotility

The term dysmotility is often used to describe abnormal movements (e.g. sluggish movements or spasm) of the gut. Some hEDS sufferers can have a sluggish stomach, which means that there is a delay in the emptying of stomach contents into the small bowel, and this is often referred to as delayed gastric emptying. Delayed gastric emptying can range in severity from mild to severe, with the most severe form called gastroparesis (paresis = paralysis). A portion of hEDS sufferers do have delayed gastric emptying, however only a few will be severe enough to be diagnosed with gastroparesis. Patients with a lot of bloating and/or fullness after meals or nausea and vomiting can be tested for delayed gastric emptying, but it is important to note that so far a link between hEDS and gastroparesis has not been categorically established.

In other patients increased sensitivity of the stomach may be a more common problem. Both dysmotility and increased sensitivity of the stomach can be associated with symptoms such as acid or bile reflux, bloating, early fullness during meals/extended fullness after meals and nausea.

Heartburn / reflux

There is some preliminary research that suggests that people with hEDS are slightly more likely to have a small hiatus hernia at the lower end of the oesophagus. This means that the upper end of the stomach slips into the chest cavity through a small hole (hiatus) in the diaphragm (the large muscle that separates the chest cavity from the abdominal cavity). This is quite a common finding and is usually not dangerous, but it can mean that the muscle that closes to stop food or liquid contents of the stomach from escaping back up into the oesophagus is somewhat inefficient, resulting in the acid reflux and/or heartburn symptoms, and this is called gastroesophageal reflux disease (GERD or GORD). However, it is also possible to experience reflux and/or heartburn symptoms without having a hiatus hernia. These symptoms can be associated with dysmotility, increased sensitivity of the oesophagus, or be experienced in isolation with none of these underlying causes.

Bloating

Abdominal bloating is a common symptom in people with hEDS, and although the underlying causes are not fully understood, it is thought that dysmotility may be a contributing factor. Overgrowth of bacteria of the small bowel can occur if there is stagnation within the bowel (i.e. constipation) and this can lead to excessive fermentation of food leading to production of gas, which can also be associated with bloating. A link between hEDS and bacterial overgrowth has not been categorically established and further research is required.

Constipation

Chronic constipation in adults is a common and debilitating problem and it is estimated that around 12 to 19% of the general population experience this, with females and the older population being more prone. Constipation is also common in patients with EDS and it is thought that a sluggish colon and difficulty with evacuation of the bowel are key causes. However there are often many factors inter-linked which can contribute to constipation such as diet, metabolic (hormone) or neurological (nerve) conditions, side effects of prescription medications, particularly opioid-based painkillers, or physical disorders such as prolapse of the bowel.

Rectal and genital prolapse are recognised as potential problems for some people with hEDS, and can be a factor contributing to constipation. Prolapse of the rectum means that the lining (mucosa) of the rectum (called a partial prolapse) or the entire rectal wall (called a complete prolapse) protrudes into the rectum, which interferes with the ability for a stool to be passed. Prolapses of the rectum usually occur during bowel movements, and then recede, but more advanced rectal prolapses can occur upon standing as well. However, in most cases prolapses tend to be small and do not require any active interventions. If a significant prolapse is diagnosed upon testing, and it is thought to be contributing to your gastrointestinal problems, your physician will refer you to a surgeon.

Functional gastrointestinal disorders

Sometimes people with hEDS who have symptoms such as reflux, heartburn, constipation or nausea may not have an identifiable cause of their symptoms on any medical testing and these patients are then given a diagnosis of functional gastrointestinal disorder (FGID). Patients who have symptoms with no underlying cause found account for more than a third of new referrals to gastrointestinal specialists, and so this is a common occurrence. A preliminary study amongst patients who were referred to a specialist because no cause of their symptoms could be found, demonstrated that over a third of those patients met the criteria for joint hypermobility and many of them had previously received a diagnosis of irritable bowel syndrome (IBS) or functional dyspepsia. IBS is the most common example of a FGID, and is characterized by recurrent abdominal pain and frequent changes in bowel habits. Functional dyspepsia is another type of FGID and relates to symptoms of upper abdominal pain, fullness, nausea and bloating, frequently following meals.

(Credits: Ehlers Danlos . Org)

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Delayed gastric emptying / dysmotility

Heartburn / reflux

Bloating

Constipation

Functional gastrointestinal disorders

(Credits: Ehlers Danlos . Org)

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This week we will discuss the use of Ketamine for treating Depression. Our guest for this week's show is Karen DeCocker, DNP, PMHNP, CNM

Karen DeCocker is the Director of Advanced Practice Providers at Stella overseeing the assessment team. She helps to identify which innovative biological medical treatments & virtual therapies can help relieve symptoms of anxiety, depression, PTSD & traumatic brain injury. After completing a virtual assessment of each patient, Dr. DeCocker and her team analyze the medical, biological, psychological & social factors to provide personalized treatment recommendations across Stella’s advanced protocols such as Dual Sympathetic Reset (advanced stellate ganglion block), Ketamine Infusion Therapy, Transcranial Magnetic Stimulation (TMS), Spravato, integration therapy, and more.

Dr. DeCocker’s priority is the patient’s outcome. She became a nurse practitioner in 2007 after 10 years of hospital nursing experience.

As rates of depression and anxiety have increased dramatically, people have sought therapies outside the standard regimen of oral antidepressants and talk therapy. Beginning in the mid-2010s, more and more doctors started offering ketamine as a treatment for depression. In 2019, the Food and Drug Administration (FDA) approved esketamine as a treatment for forms of depression that haven’t improved with standard antidepressants (like citalopram/Celexa or bupropion/Wellbutrin). (Source: Psychology Today)

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On this week's show we are speaking once again with Kristine Hoestermann, the founder of "FindYourRare" and she will be explaining how difficult it has been to get a diagnosis for Ehlers Danlos Syndrome and where that diagnosis took her (Brittle Cornea Syndrome & the BRCA Gene for Breast Cancer are the latest two) During our discussion I mentioned how I picture complex diagnoses as being like an over-spooled fishing reel, you don't know where to start to unravel the different aspects of the condition, but you know it's all connected!

Heeeeere's Kristine!

Allow me to introduce myself🦓My name is Kristine (kk). I am the CEO of RARE.™ A brand that was born from my own frustrations following the onset of my symptoms in 2016. It never occurred to me I could wake up sick and never get better. That I would lose everything I knew without noticing.

In the beginning of getting sick I experienced extreme isolation. I felt like I didn’t fit in anywhere. Among symptoms that have yet to have to be attributed to a known disease🧬I have been diagnosed with EDS , POTS, and Autoimmune Small Fiber Neuropathy Secondary to Unknown Connective Tissue Disease 🆗 That feels like a lot right? but I didn’t look sick and that made it really hard for not only me to accept but also the world around me 🌍

I created RARE.™ as a safe space for myself until I realized so many other rare disease fighters, chronic illness, chronic pain, invisible disease or any human needed that same thing. So I got to work and here we are. Together we can start to bridge the gap 🚧

🆗More about the RARE. Girl behind the brand;

🥄I am a fierce lover of Grey’s Anatomy. Meredith Grey is my person.

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Your gut microbiome is like a microscopic ecosystem within your body, housing trillions of microorganisms that interact with each other and their environment in various ways. These microbes also have a significant impact on your overall health, influencing both your digestive system and other bodily functions.

A biome is a distinct ecosystem defined by its environment and inhabitants. Your gut, specifically within your intestines, is a miniature biome teeming with trillions of microscopic organisms. This diverse community includes over a thousand species of bacteria, along with viruses, fungi, and parasites.

Your gut microbiome is uniquely yours. Initially, infants acquire their first gut microbes through vaginal delivery or breastfeeding (chestfeeding). As you grow, your diet and other environmental factors introduce new microbes to your biome, though some exposures may also harm and reduce your gut microbiota.

Most of the microorganisms in your gut have a symbiotic relationship with you, meaning you both benefit from the interaction. You provide them with food and shelter, while they offer essential services for your body, including keeping potentially harmful microbes in check.

Think of your gut microbiome as a thriving, diverse garden that you rely on for nutrients and natural medicine. When this garden is healthy and flourishing, so are you. But if the soil becomes depleted, polluted, or overrun by pests or weeds, your entire ecosystem can become unbalanced.

Your gut microbiome interacts with many of your body systems, playing such an active role that some healthcare providers consider it almost like an organ. While some of these interactions are well understood, others are still being explored.

Digestive System Bacteria in your gut help break down complex carbohydrates and dietary fibers that your body can't digest on its own. They produce short-chain fatty acids as byproducts, which are essential nutrients that help maintain a healthy gut environment. These bacteria also synthesize important vitamins like B1, B9, B12, and K, which are vital for your overall health.

Gut bacteria also assist in metabolizing bile in your intestines. After your liver sends bile to your small intestine to help digest fats, bacteria break it down so that bile acids can be reabsorbed and recycled by your liver. This process, known as enterohepatic circulation, is crucial for efficient digestion and cholesterol management.

Immune System Beneficial gut microbes help train your immune system to distinguish between helpful and harmful microorganisms. Your gut, which contains up to 80% of your body's immune cells, plays a key role in clearing out pathogens that pass through daily. Helpful gut bacteria also compete with harmful types for space and nutrients, preventing infections like C. difficile and H. pylori that can result from a weakened gut microbiome.

Short-chain fatty acids produced by gut bacteria are beneficial for your immune system, helping maintain the gut barrier and preventing harmful bacteria and toxins from entering your bloodstream. They also possess anti-inflammatory properties, which are crucial for preventing chronic inflammation and related conditions like autoimmune diseases and cancer.

Nervous System Gut microbes influence your nervous system through the gut-brain axis—a network of nerves, neurons, and neurotransmitters that connects your gut and brain. Certain bacteria produce or stimulate the production of neurotransmitters like serotonin, which send chemical signals to your brain. Researchers are studying how these interactions might impact neurological, behavioral, pain, and mood disorders.

Endocrine System Gut microbes also interact with endocrine cells in your gut lining, making your gut the largest endocrine system organ in your body. These cells secrete hormones that regulate metabolism, including blood sugar, hunger, and satiety. Researchers are investigating the role of gut microbiota in metabolic conditions like obesity, insulin resistance, and Type 2 diabetes.

Your "gut" typically refers to your gastrointestinal (GI) tract, with most people associating it with the intestines. While some gut microbiota are present in your stomach and small intestine, the majority reside in your large intestine (colon). These anaerobic bacteria thrive in the low-oxygen environment of the colon, performing essential functions like breaking down indigestible fibers and producing nutrients.

However, if these bacteria stray beyond the colon, they can be harmful. For example, colon bacteria that enter the small intestine can disrupt digestion, and those that invade the colon wall or escape through a wound can cause infections in your body.

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This week we will discuss Sturge-Weber syndrome with a wonderful woman we had the pleasure of meeting previously in Season 8 E 20.

Chelsey Peat was born with Sturge-Weber syndrome, a rare condition that led to multiple surgeries, including a life-saving brain surgery as an infant. Despite doctors predicting significant limitations, Chelsey has defied these expectations throughout her life. She graduated from high school and college, and she is currently pursuing a degree in sociology alongside a certificate in Diversity, Equity, and Inclusion.

With nearly 40 years of personal experience living with a facial difference, Chelsey has faced and overcome numerous challenges, including discrimination and stigmatization. Her deep understanding of these issues is reflected in her work with various organizations where she educates and advocates for individuals with facial disfigurements, differences, and disabilities.

Chelsey's debut publication, "Two Sides of a Face," offers an inspirational narrative of her life. This memoir details her journey from childhood, marked by curiosity and challenges due to her condition, to her current achievements and advocacy work within the facial differences community. The book explores themes of self-acceptance, self-love, and resilience, highlighting pivotal moments that shaped her identity and empowered her to embrace her imperfections.

Through personal anecdotes and her role as a mentor and public speaker, Chelsey's story in "Two Sides of a Face" is not just about overcoming a facial difference, but about transforming adversity into advocacy. Her journey serves as a beacon of hope, encouraging deeper understanding and acceptance for all who feel marginalized due to their physical appearance.

Chelsey Peat

Sturge Weber Syndrome Advocate | Author | Mentor

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Paris Scobie is a Mental Health Speaker, Host of the top 1% globally ranked podcast, Live Well Bipolar, & Best-Selling Author of her memoir, Crooked Illness: Lessons From Inside & Outside Hospital Walls.

Paris launched Live Well Bipolar to use her lived experience to help others overcome the shame, fear and isolation that can so often accompany living with bipolar. She shares how she went from being a patient struggling from inside the walls of a psychiatric hospital newly diagnosed with bipolar to returning to work at this same hospital years later. This unique perspective has allowed Paris to share her experiences on what truly made a difference for her to help others. Paris works to illustrate how everything she told herself she could never have or be is everything she has become today.

Stay connected with Paris and learn more about her work here: parisscobie.com

Crooked Illness: Lessons From Inside & Outside Hospital Walls

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Today, we have the honor of speaking once again with Sheila Ames, a registered nurse in Northern California who has been diagnosed with a rare type of a primary immunodeficiency known as common variable immunodeficiency or CVID for short. How did she fare during the recent Pandemic? Tune in now to find out!

At the time of her diagnosis she was working as an ICU nurse and her first doctors order was: no more exposure to infectious patients. This diagnosis not only changed her career dramatically, it led her to following her life's purpose in opening her own health & wellness online coaching business to help others continue to find and work towards their life's purpose despite the hurdles that life gives us.

Common variable immunodeficiency (CVID) is a primary immune deficiency disease characterized by low levels of protective antibodies and an increased risk of infections. Although the disease usually is diagnosed in adults, it also can occur in children. CVID also is known as hypogammaglobulinemia, adult-onset agammaglobulinemia, late-onset hypogammaglobulinemia, and acquired agammaglobulinemia.

NIAID supports research to determine genetic causes of CVID that may lead to therapeutic approaches to address the disease. Researchers also are exploring how antibody-based drugs may lessen the severity of the condition.

Causes

CVID is caused by a variety of different genetic abnormalities that result in a defect in the capability of immune cells to produce normal amounts of all types of antibodies. Only a few of these defects have been identified, and the cause of most cases of CVID is unknown. Many people with CVID carry a DNA variation called a polymorphism in a gene known as TACI. However, while this genetic abnormality confers increased risk of developing CVID, it alone is not capable of causing CVID.

CVID is also linked to IgA deficiency, a related condition in which only the level of the antibody immunoglobulin A (IgA) is low, while levels of other antibody types are usually normal or near normal. IgA deficiency typically occurs alone, but in some cases it may precede the development of CVID or occur in family members of CVID patients.

Symptoms & Diagnosis

People with CVID may experience frequent bacterial and viral infections of the upper airway, sinuses, and lungs. Acute lung infections can cause pneumonia, and long-term lung infections may cause a chronic form of bronchitis known as bronchiectasis, which is characterized by thickened airway walls colonized by bacteria.

People with CVID also may have diarrhea, problems absorbing food nutrients, reduced liver function, and impaired blood flow to the liver. Autoimmune problems that cause reduced levels of blood cells or platelets also may occur. People with CVID may develop an enlarged spleen and swollen glands or lymph nodes, as well as painful swollen joints in the knee, ankle, elbow, or wrist. In addition, people with CVID may have an increased risk of developing some cancers.

Doctors can diagnose CVID by weighing factors including infection history, digestive symptoms, lab tests showing very low immunoglobulin levels, and low antibody responses to immunization.

Treatment

CVID is treated with intravenous immunoglobulin infusions or subcutaneous (under the skin) immunoglobulin injection to partially restore immunoglobulin levels. The immunoglobulin given by either method provides antibodies from the blood of healthy donors. The frequent bacterial infections experienced by people with CVID are treated with antibiotics. Other problems caused by CVID may require additional, tailored treatments.

To learn more about CVID, visit the National Library of Medicine, Genetics Home Reference CVID site (Credits to NIH)

If you would like to reach out to our guest:

Sheila Ames BSN, RN, PHN

Holistic Health Coach

Business FB page: https://www.facebook.com/JourneyIntoWellness1

PID (primary immunodeficiency) group: https://www.facebook.com/groups/journeyintowellnesspid

Instagram: @journeyintowellnesscoaching

My website: journeyintowellness.net

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Ticks & Lyme Disease is the topic of the week! Our guest is Dr. Myriah Hinchey, a Naturopathic physician and Fellow of the Medical Academy of Pediatric Special Needs (MAPS), is a recognized expert in the field of Lyme disease and other complex chronic inflammatory conditions, with over 17 years of specialized experience. As a physician and the Medical Director at TAO, an integrative center for healing, she has successfully guided thousands of patients towards recovery from their complex chronic inflammatory conditions. Additionally, she is the founder and owner of LymeCore Botanicals, a herbal medicine company focused on providing effective solutions for healing vector-borne diseases. Dr. Hinchey is dedicated to treating patients of all ages, with a specialty in pediatrics, and is also a sought-after speaker, passionately educating healthcare professionals on the pathophysiology of vector-borne diseases and how to successfully integrate functional, herbal, and lifestyle medicine into their practices.

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Squeeze a world of passion, goal driven problem solver and an adventurous triathlete into 5

feet of fun and you get Faith Louise Cooper.

Faith Louise grew up in a family of 5 with 2 younger sisters. At the 12 she was diagnosed with Juvenile Rheumatoid Arthritis, now known as Juvenile Idiopathic Arthritis. In 2017 she was diagnosed with hypermobility syndrome and was recently changed to Hypermobility Ehlers Danlos Syndrome abbreviated as hEDS. Her younger sister also battles with hEDS on a daily basis.

Faith Louise joined the swim team in middle school to help manage the arthritis. She lives an enriching life and despite what the medical research says she has gone from being in excreting pain when standing for 15 mins to completing a half Ironman a few years back. Faith Louise has great joy and strength in life because of challenges she has faced.

Faith Louise, wanting to have all the tools in her tool box to live an enriching life has decided to study nutrition and is completing her certified holistic nutrition. She has passion for equipping, educating and inspiring other families going through the same thing as well as raising awareness.

In this episode she discusses the difficulties during COVID with hEDS.

Facebook: https://www.facebook.com/cooperfa/. Faith Louise Cooper

Instrgram: https://www.instagram.com/speakingoftri/. Speakingoftri

LinkIn: www.linkedin.com/in/faith-cooper Faith Louise Cooper

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This week we are discussing bullying amongst young children.

CDC defines bullying as any unwanted aggressive behavior(s) by another youth or group of youths, who are not siblings, that involves an observed or perceived power imbalance, and is repeated multiple times or is highly likely to be repeated. Bullying may inflict harm or distress on the targeted youth including physical, psychological, social, or educational harm. Common types of bullying include:

Physical such as hitting, kicking, and tripping.
Verbal including name-calling and teasing.
Relational or social such as spreading rumors and leaving out of the group.
Damage to victim's property.

Bullying can also occur through technology, which is called electronic bullying or cyberbullying. A young person can be a perpetrator, a victim, or both (also known as "bully/victim"). (credits: CDC)

We would like to take a moment to thank the judges at The National Health Information Awards Organization for granting us the Bronze Medal for Media/Publishing for 2024!

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Heavy metal poisoning (toxicity) is the result of exposure to heavy metals like lead, mercury and arsenic. Heavy metals bind to parts of your cells that prevent your organs from doing their job. Symptoms of heavy metal poisoning can be life threatening and they can cause irreversible damage.

Heavy metal poisoning occurs when microscopic molecules of metals accumulate within your body after exposure. Heavy metals attach to your cells and prevent them from performing their functions, which causes symptoms that could be life threatening without treatment.

What metals cause heavy metal poisoning (toxicity)? Several metals can be toxic to your body. The most common toxic metals are:

Lead. Contaminated water from lead pipes, batteries, paint, gasoline, construction materials.
Mercury. Liquid in thermometers, lightbulbs, dental amalgam (“silver”) fillings, batteries, seafood, topical antiseptics.
Arsenic. Topical creams, herbicides, insecticides, pesticides, fungicides, paints, enamels, glass, contaminated water, seafood, algae.
Cadmium. Cigarette smoke, metal plating, batteries.
Thallium. Rodenticides, pesticides, fireworks.

How does someone get heavy metal poisoning? You can get heavy metal poisoning by exposing yourself to heavy metals. Heavy metals form naturally within the Earth’s crust. We interact with small amounts of heavy metals every day, like when you check the temperature of your thermometer, which uses mercury. Heavy metal poisoning occurs when metals get into your body. This can happen if you’re exposed to a large amount of metal including:

Eating a lot of food that contains metals (fish).
Drinking water from older water supply systems.
Working with metals on the job.
Taking medications or supplements with high amounts of metallic elements.
Handling metals or products made with a large amount of metal (like paint or pesticides) without using personal protective equipment.

Most metals that cause poisoning are in a microscopic (molecular) form when they enter your body. They are so small, you won’t be able to see them. Heavy metals can enter your body by:

Absorbing into your skin.
Breathing in or inhaling tiny metal molecules.
Eating or drinking (ingesting) the metal from food or water.

Who does heavy metal poisoning affect? Heavy metal poisoning can affect anyone who has exposure to heavy metals. This most often affects people who:

Drink water from pipes made of older metals (lead).
Work with metals.
Take more than the prescribed dosage of medicine or supplements that contain metal.
Live in an environment with high air or water pollution.
Eat a lot of foods that contain metal.
Consume a non-edible product made with metal (paint).

Children are at a higher risk of heavy metal poisoning because their bodies are still developing and they are more sensitive to the harmful effects of heavy metals.

How common is heavy metal poisoning? The exact rate of occurrence is unknown, but in the United States, heavy metal poisoning is rare since it only affects people who have exposure to heavy metals. The number of people diagnosed with heavy metal poisoning decreased significantly over the last 20 years because of awareness and preventative measures to remove heavy metals from homes.

What does heavy metal poisoning do to my body? Exposure to heavy metals can be dangerous to your health. While we use and interact with metals every day, certain heavy metals are toxic because the molecules that make up the metal damage or negatively interact with the cells in your body that are essential to keep your organs functioning.

Your body has small amounts of metals in it already, like iron, copper and zinc. These metals are important to keep your organs functioning. If you have too much metal accumulated within your body, it can damage your vital organs like your brain and liver. (credits: Cleveland Clinic)

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Your immune system is your body's main defense against germs and illnesses. When you have lupus, you're more prone to infections because your immune system works differently than most people's. It becomes overactive and attacks your body itself.

Our guest on today's show is another repeat guest, Amber Blackburn. Amber is a Registered Nurse turned blogger and patient advocate for those with chronic illnesses. She deals with Hemiplegic Migraines and Lupus and unfortunately she caught COVID at the very start of the Pandemic.

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This week we will discuss kidney dialysis with Christina & Michael. Christina and Michael Gilchrist have quickly become known as "BLIND CHICK LIVING" & "THE CARETAKER" but who could forget Christina's service dog MOOSE!

Christina story: early teens kidney disease diagnosed, early 20's pregnant, doctor missed toxemia, seizures which caused retina and optic nerve imploded causing blindness in total kidney failure, oldest brother donated kidney, unfortunately rejected, asked if she could do home dialysis "NO!! YOU ARE BLIND", in center dialysis 5+yrs plus a young single mother, cadaveric kidney donated, start LIVING and having fun that is where Michael slid into Christina's DM's!!, started rejecting again, INSISTED on doing Peritoneal Dialysis and would not take no for an answer, kept LIVING on PD doing dialysis all over from dry camping with solar panels even got married and did PD on honeymoon and YES! on the back of a motorcycle!!, PD stopped working started home hemo with Michaels help, Michael felt he needed support and not being able to find a support group that fit his needs he started his own. That was the start of LIVING on dialysis!! We have traveled all over the country advocating for dialysis and sharing how we are LIVING!!

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This week we will discuss Red Blood Cell Exchange (RBCX) and Sickle Cell Disease (SCD). Our guest is Carly Newton.

Carly is a Registered Nurse at Terumo Blood and Cell Technologies with over 15years helping Health Care Professionals treating SCD patients with Red Blood Cell Exchange all over the globe. Specializing in apheresis treatments, Carly uses that experience to educate Health Care Professionals on the most effective ways to prescribe Red Blood Cell Exchange.

By focusing on differentiating the different types of transfusion therapies available to SCD patients, Carly has been able to put the Registered Nurse degree they earned at The University of South Australia to good use. Carly may spend their days at the Terumo Lakewood campus, but it’s the patients and helping them live their best lives that gets them up in the morning.

When they’re not at Terumo, Carly loves spending time in the great outdoors and enjoying everything the Colorado Rockies have to offer.

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As you may recall Myisha spoke with us in season 7 about Crohn's Disease and season 10 about Asthma. We are running this week's episode as a re-run of her asthma interview. Myisha is a passionate dedicated advocate she’s received proclamations from states for recognition of her advocacy and IBD awareness. Besides her challenges with Crohn's, Myisha has a daughter with severe asthma and is here today to discuss her daughters' journey.

Patients with severe asthma use the highest dose of inhaled corticosteroids plus a second controller and/or oral corticosteroids. However, despite using high dose medicines, reducing risks, and following their treatment plan, many times their asthma remains uncontrolled. Severe asthma is categorized into three types: allergic asthma, eosinophilic asthma and non-eosinophilic asthma.

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On this week's episode we are talking with Dr. Cornish about Neuro complications in Chronically Ill Patients. Dr. Cornish, a highly regarded physician, provides integrative medicine services to a diverse global patient community. Currently serving as the Functional Medicine Director of the Amen Clinic East Coast Division, she specializes in autoimmune diseases, hormone imbalances Lyme disease, autism, environmental toxicity, gut imbalances, neurology and various other chronic conditions. Employing a holistic approach, Dr. Cornish identifies the root causes of health issues within the body's biological systems, offering comprehensive treatment to both adults and children. Her treatment philosophy is integrative and evidence-based.

Within Amen Clinics, Dr. Cornish has been instrumental in developing the Neuroinflammatory Intensive program—a two-week inpatient initiative addressing neurological complications arising from chronic infectious diseases, mold illness, and other chronic inflammatory conditions including brain imaging.

Dr. Cornish's educational journey includes earning honors at Brown University for her undergraduate studies and obtaining her medical degree (M.D.) from Brown University Medical School. She further refined her skills through a family medicine residency at Georgetown University.

As a Howard Hughes Medical Fellow, Dr. Cornish conducted translational research at the National Human Genome Research Institute NIH, working under the guidance of Francis Collins, M.D., Ph.D. She currently serves as the treasurer of the board for the International Lyme and Associated Diseases Society,

Acknowledged as an authority in her field, Dr. Cornish was honored as Northern Virginia’s Top Doctor for family practice in 2021 and 2022. She has also been recognized by Continental Who’s Who as an Exceptional Woman in Healthcare, highlighting her professional excellence at Amen Clinics.

Beyond her clinical practice, Dr. Cornish is passionate about education, regularly conducting webinars to inspire medical professionals and patients to better understand functional medicine. Her aspirations include contributing to research on Alzheimer’s, Lyme Disease, and pediatric autoimmune diseases, with plans to write a book detailing her experiences. She is also a proud mom of triplets.

For more information, please visit www.amenclinics.com.

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Hormonal imbalance is this week's topic, and our guest is Dr. Dan Murauski.

As humans we are all made of the same set of biological systems but how those systems interact with one another is unique to each individual. Dr Murauski believes that the goal of a patient physician relationship is to develop an understanding of the unique variables within each system and how they interact with one another in order to optimize health and create longevity.

Dr. Daniel Murauski’s path to functional medicine began with his roots in his undergraduate education in biomedical engineering. Inspired by understanding the body as dynamic systems, he completed medical school at Chicago College of Osteopathic Medicine and went on to complete his residency in family medicine at Lutheran General Hospital in Park Ridge, IL. Throughout his journey he developed a fondness for yoga and became intrigued by philosophies that promote wellness. Dr. Murauski successfully earned his certification from the American Board of Integrative and Holistic Medicine. During his studies with ABIHM he discovered a systems based approach to wellness in the practice of functional medicine, and ultimately found his true passion in a practice that combined his engineering background with his experience in integrative medicine. He is a member of IFM and A4M and believes strongly in the continued advancement his knowledge base.

Using a goal oriented approach, Dr. Murauski works in collaboration with his patients to find and treat the root causes of disease and reestablish wellness. His interests include GI diseases, Immune dysregulation, and hormone dysfunction. He further provides integrative approaches to health optimization and cardiometablic disorders including diabetes, hypertension, elevated cholesterol, and heart disease. By establishing a relationship based in trust and education he strives to make his patients active partners in their journey towards wellness. Ultimately working to optimize each individuals’ unique interplay of their biological, mental and spiritual make up and to create an environment where one can heal and take control of their well-being.

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This week we discuss the differences between conventional western medicine, functional medicine and complementary medicine. We also will touch on the 42 different subsets of conventional medicine.

Western medicine refers to the traditional healthcare practices commonly used in the United States and much of the world. It relies on evidence-based methods to diagnose and treat symptoms and conditions. Healthcare providers in Western medicine use scientifically proven techniques to improve overall health. Examples of Western medicine include blood tests, X-rays, dietary changes, prescription medications, and surgical procedures.

Complementary medicine, on the other hand, involves treatments that supplement traditional Western medicine. These additional therapies are used alongside conventional treatments. You might also hear terms like “alternative medicine” or “holistic medicine” when referring to complementary approaches. Essentially, complementary medicine aims to enhance the effectiveness of Western medicine by incorporating other healing modalities.

In summary:

Western medicine: Evidence-based, scientifically proven methods.
Complementary medicine: Used alongside Western medicine to supplement treatment options

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This week we will discuss childhood trauma with author, speaker, and Licensed Clinical Social Worker Shari Botwin. Shari has been practicing since 1996 and is a certified trauma expert treating those with eating disorders, anxiety, depression and trauma. She’s here today to talk about her work helping individuals recover from childhood trauma.

Few of us will escape our lives without some sort of trauma—some more or less severe than our peers. Whereas previous discussions around trauma were conducted only on therapists’ couches or in private diaries, they are now being more normalized. With this decrease in stigma, we are paving the way for more possible healing.

Family-of-origin trauma is a form of trauma that comes from our home—from the place where we are programmed to want to feel safe. If this environment feels unsafe during our developmental years, it affects everything from our personality and how we feel about ourselves, to our future relationships, and even our relationship with food and substance use (Mandavia, 2016). (Credits: Mandavia A, Robinson GG, Bradley B, Ressler KJ, Powers A. Exposure to Childhood Abuse and Later Substance Use: Indirect Effects of Emotion Dysregulation and Exposure to Trauma. J Trauma Stress. 2016 Oct;29(5):422-429. doi: 10.1002/jts.22131. Epub 2016 Sep 13. PMID: 27622844; PMCID: PMC5064859.

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This week we will discuss the warnings some medications carry due to the dangerous side effects they may cause. In the past these were called "Black-Box" now the term used is simply "boxed".

Boxed warnings apply to certain medications that carry serious risks for the person taking them. The FDA decides which medications require boxed warnings.

A doctor must review the risks and benefits of a medication with a boxed warning before prescribing it. They will decide whether a medication is safe to prescribe based on a person’s health conditions, any medications they take, and other important factors.

This article will discuss boxed warnings, the types of medications that have boxed warnings, and how to discuss risks with a doctor.

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Our topic this week is Lupus and how doctors are frequently considered to be gaslighting the patients in their care.

Our guest knows from first-hand experience that when you’re relatively healthy, you tend not to think much about ‘wellness.’ But when this slips away and lupus comes barreling in… your world gets rocked.

That’s why she wrote the book, The Girlfriend’s Guide to Lupus, to help other women struggling with this chronic disease feel less alone and more empowered to take control of their health and manage their lupus.

Amanda holds an Master’s degree in counseling and owns Wonderment, a stress reduction and mindfulness training company. Oh, and Amanda and her oldest daughter both have lupus, which drives her absolutely crazy. When she’s not planning her next travel adventure, she’s drinking hot tea, walking her sweet dog in Raleigh, NC, and giving book suggestions to anyone willing to listen.

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This week we will discuss Multi-Organ transplants with Zachary Colton. Zach is 35 years old and recently underwent a successful 5 organ multivisceral intestinal transplant surgery at the Toronto General Hospital in his home country of Canada. The organs he received were: stomach, small intestine, colon, liver, and pancreas.

In 1954, the kidney was the first human organ to be transplanted successfully. Liver, heart and pancreas transplants were successfully performed by the late 1960s, while lung and intestinal organ transplant procedures were begun in the 1980s.

From the mid-1950s through the early 1970s, individual transplant hospitals and organ procurement organizations managed all aspects of organ recovery and transplantation. If an organ couldn’t be used at hospitals local to the donor, there was no system to find matching candidates elsewhere. Many organs couldn’t be used simply because transplant teams couldn’t locate a compatible recipient in time.

Since that time UNOS was created in order to provide guidance to patients and physicians in the US with a goal of providing a more equitable base for individuals in need of transplanted organ(s).

The United Network for Organ Sharing (UNOS) is a non-profit scientific and educational organization that administers the only Organ Procurement and Transplantation Network (OPTN) in the United States, established (42 U.S.C. § 274) by the U.S. Congress in 1984 by Gene A. Pierce, founder of United Network for Organ Sharing. Located in Richmond, Virginia, the organization's headquarters are situated near the intersection of Interstate 95 and Interstate 64 in the Virginia BioTechnology Research Park.

United Network for Organ Sharing is involved in many aspects of the organ transplant and donation process: * Managing the national transplant waiting list, matching donors to recipients. * Maintaining the database that contains all organ transplant data for every transplant event that occurs in the U.S. * Bringing together members to develop policies that make the best use of the limited supply of organs and give all patients a fair chance at receiving the organ they need, regardless of age, sex, ethnicity, religion, lifestyle, or financial/social status. * Monitoring every organ match to ensure organ allocation policies are followed. * Providing assistance to patients, family members and friends. * Educating transplant professionals about their important role in the donation and transplant processes. (CREDITS: Wiki) * Educating the public about the importance of organ donation.

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This week we will discuss Ectoparasites. The CDC says: "Although the term ectoparasites can broadly include blood-sucking arthropods such as mosquitoes (because they are dependent on a blood meal from a human host for their survival), this term is generally used more narrowly to refer to organisms such as ticks, fleas, lice, and mites that attach or burrow into the skin and remain there for relatively long periods of time (e.g., weeks to months). Arthropods are important in causing diseases in their own right, but are even more important as vectors, or transmitters, of many different pathogens that in turn cause tremendous morbidity and mortality from the diseases they cause.

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Over 200 years ago Louis Pasteur was born in Dole, France. Among Pasteur's major contributions and their benefit to society, the most important is the heat treatment of foods and beverages to reduce spoilage and eliminate pathogens for consumers.

Probably the greatest achievement of Pasteur was the process that bears the name of this famous scientist who perfected the technique: pasteurization. For liquids, this process does not involve boiling the product to sterility but simply applying just enough heat (ie, par-boiling) to 50–60°C for a specified period to reduce spoilage microbes and potential pathogens. Pathogenic microbes have a lower heat tolerance than most other bacteria. Recognizing that many individuals, from the highly educated to the peasantry, were aware of the effect, it took someone like Pasteur to formalize this knowledge into specific time-temperature standards to assure consistency.

Unpasteurized foods are sold even though they have not been treated with high temperatures. Foods that haven’t been pasteurized include:

raw milk
some artisanal cheeses
some unpasteurized versions of juices and meats

Many food safety concerns and a high risk of foodborne illness are associated with eating unpasteurized foods, although there may be a few benefits.

Still, evidence indicates that the health risks appear to outweigh any potential benefits in most cases.

Here are the benefits and downsides of unpasteurized food products.

Benefits of eating unpasteurized foods Unpasteurized food is more likely to retain its organoleptic properties and may sometimes have greater nutritional value. The term “organoleptic properties” refers to the food’s taste, appearance, and smell.

Exposure to high temperatures during pasteurization not only kills harmful bacteria and viruses in foods. It may also negatively affect the nutritional quality, appearance, and flavor of the food.

For instance, some research demonstrated that pasteurization reduced the protective antibodies and immune-supportive vitamin C and zinc in donor human milk.

However, other research shows that these nutrient losses in human milk are minor and that the benefits of pasteurization are greater than the risks.

Downsides of eating unpasteurized foods Unpasteurized foods are associated with the occurrence of foodborne illnesses from bacteria, such as Brucella, Cryptosporidium, Listeria monocytogenes, and antibiotic-resistant Staphylococcus aureus.

In particular, scientific literature frequently mentions that unpasteurized milk and dairy products are particularly high risk foods and common causes of these foodborne illnesses.

These bacterial infections may last from days to weeks. Effects range from mild symptoms — like fever, diarrhea, vomiting, muscle aches, abdominal pain, and poor appetite — to severe outcomes like miscarriage and even death.

Unpasteurized foods present even greater health risks and are more dangerous to people with compromised immune systems, such as older adults, pregnant people, young children, and those with health conditions like cancer.

Summary Unpasteurized foods are slightly more likely to retain natural tastes, appearances, flavors, and nutrients, but they are strongly associated with foodborne illnesses. Evidence indicates that the risks of consuming unpasteurized foods greatly outweigh the benefits, especially for immune-compromised people. (CREDITS)

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In this episode we are talking again with our audio editor Jack Scaro. The topic again is: spontaneous pneumothorax, or collapsed lung.

Spontaneous pneumothorax is an abnormal condition of the lung characterized by the collection of gas in the pleural space between the lungs and the chest wall. This condition occurs without an obvious etiology and can be classified as either primary or secondary. Patients may present with symptoms such as tachycardia and dyspnea. The diagnosis is based on clinical suspicion and can be confirmed with imaging.

Jack had this condition which surprised everyone since he was a healthy 20 year old with no risk factors except.... you'll have to listen to this week's episode to find out what it is and whether you or a loved one could be at risk!

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This week we will continue our coverage of Bile acid malabsorption (BAM), a gastrointestinal disease. It’s a common cause of chronic diarrhea. When bile acids aren’t properly absorbed in your intestines, they build up, upsetting the chemical balance inside. Excess bile acids trigger your colon to secrete extra water, leading to watery stools.

Bile acid malabsorption (BAM) is often misdiagnosed as Irritable Bowel Syndrome or is overlooked in individuals with Crohn’s disease.

Bile Acid Malabsorption happens when the small intestine is unable to direct bile acid back to the liver. This means that the body doesn’t absorb water properly and affects digestion. The condition results in what is known as Bile Acid Diarrhoea.

How will a new test for Bile Acid Malabsorption be developed?

Currently, the only test for bile acid malabsorption is the SeHCAT test which is expensive, time consuming and uses radiation.

The team have developed a test which they believe will diagnose the condition more rapidly and cost effectively than the current test. For its initial testing phase, it will be used on stool (poo) samples, and in its second phase the research team will assess whether it can also guide treatment decisions on what dose should be given to individual patients.

The aim of the study is to establish a better test for BAM, do the groundwork for a future study of the role of faecal bile acid measurements within the NHS, and use the data collected from this trial to prepare other studies to assist with the diagnosis and treatment of individuals with BAM.

Why diagnose bile acid malabsorption? Chronic diarrhea is one of the most common reasons why people get referred to specialist gastroenterology clinics, and can account for as many as 1 in 20 referrals. Bile acid malabsorption is a major cause of chronic diarrhoea and is thought to affect up to 1 million people in the UK.

As well as individuals with Crohn’s disease, as many as one in three people diagnosed with IBS with diarrhoea (IBS-D) may actually be experiencing BAM but the current gold standard SeCHAT test is only available in certain UK centres. It is also time consuming and costly.

In 2012 the National Institute for Health and Care Excellence’s Diagnostic Advisory Group concluded that a new test for the diagnosis of BAM was needed. (credits: Diagnosing bile acid malabsorption - Bowel Research UK :Bowel Research UK )

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This week we will discuss Bile acid malabsorption (BAM), a gastrointestinal disease. It’s a common cause of chronic diarrhea. When bile acids aren’t properly absorbed in your intestines, they build up, upsetting the chemical balance inside. Excess bile acids trigger your colon to secrete extra water, leading to watery stools.

What are bile acids? Bile is a substance your liver makes while filtering your blood. Your liver sorts waste products, such as toxins, dead blood cells and excess cholesterol into bile. Bile acids come from synthesizing these products together. The different acids in bile help to stabilize the lipids in the mix and keep them in a liquid form.

Your liver sends bile through your bile ducts to your small intestine to help with digestion. Bile acids in your small intestine help break down fats for absorption. When that work is done, they are supposed to be reabsorbed themselves, returning to your circulation and then your liver to be recycled into bile again.

What is malabsorption? Malabsorption is any failure of your intestines to absorb all of the chemicals they’re meant to. Malabsorption can be a problem with your intestines themselves, or it may result from a chemical imbalance. For example, you may have too much or too little of a certain chemical for your intestines to absorb.

Who does bile acid malabsorption affect? BAM has been historically underdiagnosed due to a lack of accessible ways to test for it. But studies now show that at least 30% of those diagnosed with functional diarrhea disorders may have BAM. Functional disorders are those that have no apparent cause and are likely to go undetected during a medical examination, such as irritable bowel syndrome (IBS).

BAM is seen in people with conditions such as:

Microscopic colitis.
Crohn disease.
HIV-related enteritis.
Diarrhea that persists after a bacterial infection.
Exocrine pancreatic insufficiency.

It can also happen in people who receive certain medical treatments including:

Surgical bypass or resection of the ileum, the last section of the small intestine.
Gallbladder removal (cholecystectomy).
Radiation therapy, especially in the abdominal-pelvic region.
Chemotherapy.
Metformin, a treatment for type 2 diabetes.

What are the symptoms of bile acid malabsorption? Typical symptoms include:

Watery diarrhea.
Frequent bowel movements.
Painful stomach cramps.
Urgency and difficulty holding bowel movements in.

Some people also have:

Abdominal bloating.
Gas and gas pain.
Steatorrhea (fatty stools.)
Indigestion.

Long-term symptoms can include:

Dehydration.
Fatigue.
Headaches.
Dizziness.
Nausea.
Weight gain.
Weight loss.

About half of people have constant symptoms, and the other half only report occasional symptoms.

What causes bile acid diarrhea? The symptoms of bile acid malabsorption — primarily, bile acid diarrhea, or BAD — result from the buildup of bile acids in your colon, where food waste turns to poop. Normally, 95% of the bile acids in your small intestine are reabsorbed in the last segment (the ileum) before passing on to your colon.

When too many are left over, however, they pass into your large intestine with the rest of the waste. Bile acids in your colon irritate the mucous lining, triggering it to secrete extra fluid and speeding up the muscle contractions that move poop along. This causes frequent, urgent diarrhea and cramping.

What causes bile acid malabsorption? What causes bile acids to build up in your intestines is another question.

Researchers have classified the possible causes of BAM into four different types. Sometimes they classify BAM as either primary or secondary.

Primary BAM is caused by your liver overproducing bile acids (types 2 and 4.)

Secondary BAM is caused by damage to your small intestine due to disease, surgery or radiation treatment (types 1 and 3.)

Type 1 BAM is caused by a problem with your ileum itself. This is considered true malabsorption, because the problem begins at absorption stage of the bile acid cycle. You may have type 1 BAM if you’ve had the last part of your small intestine surgically removed, altered or bypassed to treat another condition. Certain diseases, such as Crohn’s disease, and treatments such as radiation therapy can also damage the ileum. Significant damage impairs its ability to absorb.

Type 2 BAM has sometimes been called “idiopathic,” which means that it happens spontaneously or for unknown reasons. However, current research suggests that it's a problem with the chemical signaling between your intestines and your liver. This signaling is what normally regulates your bile acid cycle (enterohepatic circulation.) Chemicals in your blood signal when your liver should produce and deliver more bile acids and when it’s time to stop, reabsorb and recycle them. But with type 2 BAM, your liver doesn't get the memo to stop. So, it keeps sending bile acids — too many for your ileum to absorb.

Type 3 BAM is caused by gastrointestinal diseases that can affect your ileum along with other parts of your digestive system. These include celiac disease, chronic pancreatitis and small intestinal bacterial overgrowth (SIBO).

Type 4 BAM is caused by excessive bile acid production as a side effect of taking Metformin.

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This week we will discuss a Veteran's hesitancy to receive healthcare at the government hospital system known as Veterans Administration or "VA". Although many veterans may share the concern over receiving care through a government agency due to the medical care they got while in training or active duty; i.e. sucrettes and tylenol being the standard of care when Jean Marie and I were in training. Our guest, Mark Frerichs, has different reasons to question the quality of care. Mark, a Navy veteran who continued working as a contractor post-war in Afghanistan. It was during his work after the war that created a hesitancy in trusting anything related to the government.

Mark Randall Frerichs (born July 13, 1962) is an American civil engineer and former US Navy diver who disappeared in Afghanistan in January 2020 and was later confirmed to be captured by the Haqqani network, a group closely aligned with the Taliban. In September 2022, Frerichs was released by the Taliban-led government of the Islamic Emirate of Afghanistan in exchange for Bashir Noorzai.

Frerichs is a director of International Logistical Support whose work had led him to visit Afghanistan multiple times since 2012. He served in the United States Navy as a diver.

https://www.tiktok.com/t/ZTLL8pHkA/

https://www.tiktok.com/t/ZTLL8aDP6/ Frerichs disappeared in Kabul, Afghanistan, on January 31, 2020. The Associated Press reported that US intelligence officials tracked Frerichs's cell phone and raided a village near where he disappeared, approximately a week after his disappearance. Although they rounded up individuals from that village, the raid proved unproductive. The next month, Newsweek magazine reported that officials had confirmed that Frerichs had been taken captive by the Haqqani network, a group closely aligned with the Taliban.

Frerichs's sister, Charlene Cakora, questioned why the US government "signed a peace deal" with the Taliban in early February 2020 that did not include a provision for releasing her brother. The Federal Bureau of Investigation, the lead agency of the Hostage Recovery Fusion Cell, issued a statement saying the cell was working to ensure "that Mark Frerichs and all Americans held hostage abroad are returned home."

On May 10, 2020, the FBI offered a $1-million reward for information that helps lead to Frerichs's release or rescue. In addition, the Rewards for Justice Program offered a $5-million reward for information leading to his location. That same day, Taliban spokesmen asserted that they had conducted an inquiry of their subordinate and associated groups and confirmed they were not holding Frerichs.

The New York Times reported Frerichs was still a captive on November 21, 2020, when Secretary of State Mike Pompeo traveled to Afghanistan to personally participate in peace negotiations with the Taliban. They reported it was unknown whether Pompeo raised Frerichs's captivity as an issue during the talks.

On April 1, 2022, a video was released showing Frerichs pleading for help. Following the release of Safi Rauf, an American aid worker who was held captive by the Taliban between December 2021 and April 2022, the US State Department began an attempted inquiry into the release of Frerichs. The inquiry did not result in substantial headway in brokering Frerichs' release. Frerichs's family was a part of the Bring Our Families Home campaign.

On September 19, 2022, Taliban Foreign Minister Amir Khan Muttaqi told reporters in Kabul that his government and a US delegation swapped prisoners at the Afghan capital's airport. Frerichs was exchanged for Bashir Noorzai. (credits: Mark Frerichs - Wikipedia)

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In this episode we discuss adrenal insufficiency

You can have either primary, secondary, or tertiary adrenal insufficiency.

Primary adrenal insufficiency is also called Addison’s disease. When you have this type, your adrenal glands are damaged and can’t make the cortisol you need. They also might not make enough aldosterone.

Secondary adrenal insufficiency is more common than Addison’s disease. The condition happens because of a problem with your pituitary gland, a pea-sized bulge at the base of your brain. It makes a hormone called adrenocorticotropin (ACTH). This is the chemical that signals your adrenal glands to make cortisol when your body needs it. If your adrenal glands don’t get that message, they may eventually shrink. This is the type our guest on this week's episode is dealing with.

Tertiary is due to hypothalamic disease and a decrease in the release of corticotropin releasing hormone (CRH). Causes can include brain tumors and sudden withdrawal from long-term exogenous steroid use (which is the most common cause overall)

The most common cause of Addison’s disease today is an autoimmune problem, when your immune system malfunctions and attacks and damages your own body, in this case, your adrenal glands.

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Have you ever wondered "what would happen if you or a family member had a medical emergency while using public transportation" Today we feature Bill H. who had a cardiac event after boarding a Chicago Metra train and the two bystanders that weren't about to let these be his LAST train ride!

Automated external defibrillators can help save lives during sudden cardiac arrest. However, even after training, remembering the steps to use an AED the right way can be difficult. In order to help keep your skills sharp, we've created a quick step-by-step guide that you can print up and place on your refrigerator, in your car, in your bag or at your desk. This way, you can review the AED steps any time, at your convenience, and keep them fresh in your memory.

How to Use An AED These AED steps should be used when caring for a non-breathing child aged 8 or older who weighs more than 55 pounds, or an adult.

After checking the scene and ensuring that the person needs help, you should ask a bystander to call 911 for help, then:

Complete the CHECK and CALL steps
As soon as an AED is available, turn it on and follow the voice prompts
Remove clothing and attach pads correctly
Remove all clothing covering the chest. If necessary, wipe the chest dry
Place one pad on the upper right side of the chest
Place the other pad on the lower left side of the chest, a few inches below the left armpit

Note: If the pads may touch, place one pad in the middle of the chest and the other pad on the back, between the shoulder blades

Plug the pad connector cable into the AED, if necessary
Prepare to let the AED analyze the heart’s rhythm
Make sure no one is touching the person
Say, “CLEAR!” in a loud, commanding voice
Deliver a shock, if the AED determines one is needed
Make sure no one is touching the person
Say, “CLEAR!” in a loud, commanding voice
Push the “shock” button to deliver the shock
After the AED delivers the shock, or if no shock is advised, immediately start CPR, beginning with compressions

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This week we are speaking with Dani, AKA, Stoned Zebra. It took almost 7 years of her health declining after giving birth, until she finally received her EDS diagnosis. She was initially misdiagnosed with Lupus, Fibromyalgia, Neuropathy, or chronic pain syndrome. Her gastroparesis, symptoms (bloating, nausea, early satiety, severe constipation, weight loss, dehydration, belching, belly pain) began July 2022, and after a ton of aggressive testing, she was diagnosed in May 2023.

EDS just tacks on chronic pain, joint instability and other comorbidities like POTS, MCAS, and OH that she also developed. She currently is primarily tube fed, via GJ. She will soon have separate stomas placed due to EDS complications.

If you would like to follow her rare disease journey, send a follow request @stonedzebra along with a message of where you found her page! Her rare journey is only available to friends on TikTok, she keeps her circle small. If you’d like to follow and see her handmade gifts/online store, she is on TikTok Shop at SZ Creations, and @stndzebracreations.

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This week we will discuss a topic that is of concern for millions of people: "Long Covid" and our guest this week is Grace Miller. Grace is 20 years old, and lives in Iowa. Currently attending college, where she is president of the honor society and finishing up her gen eds. She plans on pursuing a degree in Communication Disorders and become a speech pathologist. Some of her hobbies include crocheting, singing, playing the piano, and learning.

Some people who have been infected with the virus that causes COVID-19 can experience long-term effects from their infection, known as Long COVID or Post-COVID Conditions (PCC). Long COVID is broadly defined as signs, symptoms, and conditions that continue or develop after acute COVID-19 infection.

This definition of Long COVID was developed by the Department of Health and Human Services (HHS) in collaboration with CDC and other partners.

People call Long COVID by many names, including Post-COVID Conditions, long-haul COVID, post-acute COVID-19, long-term effects of COVID, and chronic COVID. The term post-acute sequelae of SARS CoV-2 infection (PASC) is also used to refer to a subset of Long COVID. (Credits: CDC)

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Continuing a mini-series on obesity, we welcome once again Dr. Ifland. She founded the online Addiction Reset Community (ARC) in 2016, www.foodaddictionreset.com. The Facebook group, ‘Food Addiction Education’ (2014) and www.foodaddictionresources.com (2014) provide free support. Reset Week is the first online live video program for withdrawal (2018). ARC Manager Training is a program training future Addiction Reset Community leaders (2020).

Dr. Ifland is the lead author of the first scholarly description of processed food addiction and definition of addictive foods.

Dr. Ifland earned her PhD in addictive nutrition at Union Institute and University (2010); her MBA at Stanford Business School (1978) and her BA in Economics and Political Science at Oberlin College (1974). She currently resides in Seattle.

Social Media links: Facebook - https://www.facebook.com/groups/1806154526275515

Twitter https://twitter.com/JoanIfland

Instagram

https://www.instagram.com/foodaddictionreset/

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This week we will discuss the obesity problem for children in the US. Our guest, once again, is Dr. Joan Ifland. Dr Ifland has been creating breakthroughs in recovery from food addiction from 1999 with her first popular book to 2018 when her textbook, Processed Food Addiction: Foundations, Assessment, and Recovery was released by CRC Press.

She founded the online Addiction Reset Community (ARC) in 2016, www.foodaddictionreset.com. The Facebook group, ‘Food Addiction Education’ (2014)

and

www.foodaddictionresources.com (2014) provide free support. Reset Week is the first online live video program for withdrawal (2018). ARC Manager Training is a program training future Addiction Reset Community leaders (2020).

Dr. Ifland is the lead author of the first scholarly description of processed food addiction and definition of addictive foods.

Social Media links:

Facebook - https://www.facebook.com/groups/1806154526275515

Twitter

https://twitter.com/JoanIfland

Instagram

https://www.instagram.com/foodaddictionreset/

Childhood obesity is a complex disease with many contributing factors, on including genetics, eating patterns, physical activity levels, and sleep routines. About 1 in 5 American children has obesity. Compared to children with healthy weight, children with obesity are at a higher risk for asthma, sleep apnea, bone and joint problems, type 2 diabetes, and risk factors for heart disease such as high blood pressure.

"Childhood obesity continues to rise around the world, and the World Health Organization has called it “one of the most serious public health challenges of the 21st century.”

Yet the prevalence of childhood obesity appears to vary across countries.

Island nations in the Pacific, such as Nauru and the Cook Islands, appear to have the highest obesity rates among children 5 to 19, but the countries Ethiopia and Burkina Faso appear to have the lowest rates. The number of obese or overweight children 5 and younger climbed from 32 million globally in 1990 to 41 million in 2016, according to WHO data. If current trends continue, the number of overweight or obese children in that age group could increase to 70 million by 2025." (CNN Health News)

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Skilled Nursing care, also known as Post-Acute Rehabilitation, is for those who need short-term care following an injury, surgery, or illness. The goal with this level of care is to successfully transfer patients from hospital to home, or senior living community, by providing the tools and resources for each phase of recovery. A stay at a skilled nursing, rehabilitation, and post-acute care center is meant to be a transitional period to help patients recover and return to their everyday lives.

Our Co-Host Ron had shoulder surgery recently and needed this type of care until he could regain use of his "good-arm". As you probably know from an episode we did (again with Ron as the guest) very early in our podcasting to discuss his life with a disability. You see, Ron was hit be a motor vehicle as a child and lost the use of one of his arms.

You can understand how rehabbing after shoulder surgery would be impossible without help! He is here to explain that process, and I'd like to report he is now back to his version of 100%! He is even going to the Vegas-Shoot in a couple of weeks to compete once again in target archery.

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This week we will discuss the confidence building in children with returning guest, Casey Hersch!

Casey Hersch is a licensed clinical social worker, psychotherapist, author, Latin ballroom dancer, health journalist, and animal advocate. She uses holistic and resilience-based models to help children and families cope with trauma, stress, and illness.

A Regent’s scholar and CSU Chico’s social worker of the year, she has devoted her career to helping children, parents, families, and communities build resilience and minimize the effects of stress, trauma, and adverse childhood experiences throughout the lifespan. During her childhood, Casey witnessed the toll of trauma and stress on her health. She has spent most of her adult life overcoming Crohn’s disease (autoimmune) and mental illness (anxiety), which further motivates her to create resources for children. Her passion for giving voice to the health benefits of animal rescue and pet companionship granted her recognition for excellence by the Cat Writer’s Association. Her work is published in a variety of venues.

Casey’s diverse clinical experience as a psychotherapist, child custody investigator, educator, and community organizer inspired I Am Pawso. All too often Casey sees toddlers, tweens, teenagers, and adults who missed out on early interventions. These mental health resources in schools, homes, and communities can reduce the long-term consequences of stress and trauma, such as chronic illness, mental illness, anger and behavior management issues, depression, and violence. Casey’s evidence-based philosophy is simple: When we provide children the lessons and resources they need to build resilience, emotional intelligence, and healthy brain neural pathways, we give them the best opportunities to thrive. I Am Pawso is Casey’s gift to children: An intervention providing them the tools and confidence they need to live healthy and successful lives.

I Am Pawso is a family labor of love. Casey’s rescue cat, Pawso, is the main character. Her husband, Scott, illustrated the book by taking real photographs of Pawso. When Casey is not writing, she is Latin Ballroom dancing, serving her community, and playing with her cats, Pawso and Samba.

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This week we will discuss severe Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Our guest is Galen Warden, the mom to six adult children, one being her son James Strazza. Galen is now a full time caregiver to James due to the severity of his disease.

Here are her words: "James was a healthy young man until he very slowly, because of medical ignorance and poor advice, became weaker and sicker following a severe case of the Epstein Barr Virus when he was just 19. After a few years, he slowly lost his ability to drive, to stand in his kitchen and prepare food for himself, then to walk more than a few steps, to use an electric wheelchair, and finally, to even sit up if carried onto a commode. He’s been 100% bed bound for three years. What is this bizarre disease that so many medical doctors prefer to pass off as psychological, psychosomatic or self-inflicted? Myalgic Encephalomyelitis was, in the past, known only as Chronic Fatigue Syndrome. An unfortunate name because it’s so easily dismissed as simple chronic fatigue, familiar to many with autoimmune diseases. ME/CFS is entirely different. It’s a disease not known, not taught, but not rare. Just rarely acknowledged, and more rarely understood....

ME appears to be a post-viral disease. The onset can be caused by Epstein Barr, Dengue Fever, Covid 19, and other viral illnesses. Now, research is so urgent because Long Covid is impacting thousands who are unaware of the potential that they could end up like James.

Post-viral Covid could easily continue to progress to Severe ME/CFS if patients are not aware of how to manage their overwhelming weakness and fatigue. They must rest and never push themselves. They need the early support of their families to pick up the burden of making meals, driving them, helping them rest as much as possible. Because, if they don’t allow them to rest now, caring for them will become a very heavy burden.

These patients, with their desperate families, their disbelieving caregivers and puzzled doctors, are why I’m compelled to add documenting our experience to my long list of weighty obligations."

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This week we will discuss how to avoid toxins when cooking for a crowd. The following comes straight from the CDC:

Prevent Food Poisoning During the Holidays Feasting with family is part of many holiday celebrations. Follow these tips to help prevent food poisoning, or foodborne illness, during the holidays.

Keep foods separated. Keep meat, chicken, turkey, seafood, and eggs separate from all other foods at the grocery store and in the refrigerator. Prevent juices from meat, chicken, turkey, and seafood from dripping or leaking onto other foods by keeping them in containers or sealed plastic bags. Store eggs in their original carton in the main compartment of the refrigerator.
Cook food thoroughly. Use a food thermometer to make sure meat, chicken, turkey, seafood, and eggs have been cooked to a safe internal temperature to kill germs. Roasts, chops, steaks, and fresh ham should rest for 3 minutes after you remove them from the oven or grill.
Keep food out of the “danger zone.” Germs can grow rapidly in the danger zone between 40°F and 140°F. After food is prepared, keep hot food hot and cold food cold. Refrigerate or freeze perishable food like meat, chicken, turkey, seafood, eggs, cut fruit, cooked rice, and leftovers within 2 hours (1 hour if food is exposed to temperatures above 90°F, such as in a hot car). The temperature in your refrigerator should be set at 40°F or below and the freezer at 0°F or below.
Use pasteurized eggs for dishes containing raw eggs. Salmonella and other harmful germs can live on both the outside and inside of normal-looking eggs. Many holiday favorites contain raw eggs, including eggnog, tiramisu, hollandaise sauce, and salad dressings. Always use pasteurized eggs when making these and other foods made with raw eggs.
Know that raw flour and eggs can have germs. Uncooked dough and batter made with flour or eggs can contain harmful germs, such as E. coli and Salmonella. This includes dough or batter for cookies, cakes, pies, biscuits, pancakes, tortillas, pizza, or crafts. Some companies and stores offer edible cookie dough made with heat-treated flour and pasteurized eggs or no eggs. Read the label carefully to make sure the dough is meant to be eaten without baking or cooking.
Thaw your turkey safely. Thaw frozen turkey in the refrigerator, in a sink of cold water (change the water every 30 minutes), or in the microwave. Do not thaw turkey or other foods on the counter. A turkey must thaw at a safe temperature to prevent harmful germs from growing rapidly. Learn more about preparing turkey safely.
Wash your hands with soap and water during these key times when you are likely to get and spread germs:
- Before, during, and after preparing food
- Before eating food
- After feeding pets
- After using the toilet
- After changing diapers or cleaning up a child who has used the toilet
- After touching garbage
- Before and after caring for someone who is sick
- Before and after treating a cut or wound
- After blowing your nose, coughing, or sneezing

Some family and friends may be at higher risk for serious food poisoning. Take steps to help prevent them from getting sick this holiday season by choosing safer food options for

Adults over 65
Children under 5
Pregnant people
People with weakened immune systems

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This week we are talking about a rare condition, FOXG1. This syndrome is a rare genetic neurodevelopmental disorder caused by a mutation in the FOXG1 gene. FOXG1 gene is one of the first and most important genes for early brain development and when impaired, causes cognitive and physical disabilities as well as medical complexities including epilepsy. Every child born with FOXG1 syndrome is unique as FOXG1 manifests as a spectrum where symptoms and severity vary between individuals. Our patient data shows characteristics of children with FOXG1 syndrome include: nonverbal, non-ambulatory, experience seizures, feeding problems, cortical vision impairment, movement disorders, and developmental delays. Less-severely-affected FOXG1 children often present with (ASD) Autism Spectrum Disorder as FOXG1 is an autism related gene. FOXG1 syndrome is found equally among both females and males and is geographically more prevalent where diagnostic testing is more advanced. (credits: The FoxG1 Foundation) Our guest is a mother to a child with FoxG1, Ilissa Reich. Ilissa is a former fashion executive who transformed her career into being a fierce advocate for families of children with special needs.

When her now-3-year-old son, Eli, was diagnosed with FOXG1 Syndrome, a rare brain disorder with no cure, she spun into action and co-founded Believe in a Cure (webelieveinacure.org), a 501(c)(3) non-profit foundation working to develop a treatment for FOXG1.

Founded in 2019, Believe has raised millions of dollars and funded over 40 research and development projects around the world.

long the way, the foundation has partnered with preeminent institutions ranging from the National Institutes of Health to Harvard, MIT, and Tel Aviv University, to biotechnology companies in Europe, Asia, and the United States.

Renowned scientists from industry and academia serve on the scientific advisory board of the foundation, and several notable leaders serve on the foundation’s lay advisory council, including former U.S. senators Joe Lieberman and Paul Kirk, the former CEO of Staples Ron Sargent, mediation czar Ken Feinberg, and many more. This journey has opened Ilissa’s eyes to the experiences of countless other families who struggle each day, and despite her own anguish, Ilissa endeavored to create a platform for mothers of kids with special needs to build community and offer support.

She has appeared on the Today show, in People magazine, and a host of other outlets profiling her efforts.

A native Long Islander, Ilissa previously worked in fashion at notable brands Tibi, Free People, Splendid, and Alternative Apparel.

She studied business in college at The George Washington University. She lives in Port Washington with her husband, Scott, and their three children.

When asked: 'What has enabled you to be successful?' she responded-

“I always aspire to be a good role model for my children. I want to be someone they’re proud of.”

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This week we will discuss M-RNA vaccines. Our guest is Thomas VanCott, PhD. Thomas VanCott is currently the Chief Scientific Officer for Combined Therapeutics, a Boston based biotech company developing targeted mRNA therapies. Prior to this he served as the Chief Technology and Strategy Officer for Catalent Cell & Gene Therapy, a global CDMO manufacturing viral vectors for gene and cell therapies as wells as plasmid DNA & mRNA platforms based in Baltimore, MD. He was responsible for strategically enhancing CMC services to meet the market demand of increasingly complex gene and cell therapy products as well as leading the product development and internal R&D teams. Prior to this, he was the CEO for 10 years at a Maryland-based CMO/CRO (ABL) where he was responsible for the strategic international growth of the company. He has been involved in biologics product development for over 25 years. He has a PhD in physical chemistry and started his career as a Captain in the US Army stationed at Walter Reed Army Institute of Research (WRAIR) studying and developing HIV vaccines for international deployment from initial construction through preclinical development, GMP manufacturing and clinical development.

Vaccines help prevent infection by preparing the body to fight foreign invaders (such as bacteria, viruses, or other pathogens). All vaccines introduce into the body a harmless piece of a particular bacteria or virus, triggering an immune response. Most vaccines contain a weakened or dead bacteria or virus. However, scientists have developed a new type of vaccine that uses a molecule called messenger RNA (mRNA) rather than part of an actual bacteria or virus. Messenger RNA is a type of RNA that is necessary for protein production. Once cells finish making a protein, they quickly break down the mRNA. mRNA from vaccines does not enter the nucleus and does not alter DNA.

mRNA vaccines work by introducing a piece of mRNA that corresponds to a viral protein, usually a small piece of a protein found on the virus’s outer membrane. (Individuals who get an mRNA vaccine are not exposed to the virus, nor can they become infected with the virus by the vaccine.) By using this mRNA, cells can produce the viral protein. As part of a normal immune response, the immune system recognizes that the protein is foreign and produces specialized proteins called antibodies. Antibodies help protect the body against infection by recognizing individual viruses or other pathogens, attaching to them, and marking the pathogens for destruction. Once produced, antibodies remain in the body, even after the body has rid itself of the pathogen, so that the immune system can quickly respond if exposed again. If a person is exposed to a virus after receiving mRNA vaccination for it, antibodies can quickly recognize it, attach to it, and mark it for destruction before it can cause serious illness.

Like all vaccines in the United States, mRNA vaccines require authorization or approval from the Food and Drug Administration (FDA) before they can be used. Currently vaccines for COVID-19, the disease caused by the SARS-CoV-2 coronavirus, are the only authorized or approved mRNA vaccines. These vaccines use mRNA that directs cells to produce copies of a protein on the outside of the coronavirus known as the “spike protein”. Researchers are studying how mRNA might be used to develop vaccines for additional diseases. (credits: Medline Plus)

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This week we will discuss how important it is to continue masking and keeping away from crowds as a chronically ill or immunocompromised person. Our guest today is Veronica Hanway. Immunocompromised individuals are not optimally protected by COVID-19 vaccines and potentially require additional preventive interventions to mitigate the risk of severe COVID-19.

Veronica, a Latina mother and first generation Geography PhD student in her second year, is 35 years old and has had a lifetime of chronic migraines. With her first migraine at just three years old, she is no stranger to migraine symptoms, MRIs, CTs, neurology appointments, and treatments.

She is an advocate for public health and community care during the ongoing SARS CoV 2 (Covid 19) pandemic. Veronica is committed to protecting her immunocompromised child and her high risk family while also continuing her National Science Foundation Graduate Research Fellowship doctoral studies. Her passions include spending time with her family, advocating for safer spaces for disabled, high risk, immunocompromised, and BIPOC communities, learning how people have adapted to avoiding Covid infections and reinfections, and how people have created Coviding communities.

She loves painting, singing, having fun, and reading with her son and partner. She is committed to helping others know that they aren't alone in navigating health issues while the effects of climate change and pandemic rage on.

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This week we will be talking about Sick Sinus Syndrome (SSS) with Audrey Brown. Sick sinus syndrome (SSS) is a disease in which the heart's natural pacemaker located in the upper right heart chamber (right atrium) becomes damaged and is no longer able to generate normal heartbeats at the normal rate. It may be a result of other medical conditions that damage the sinoatrial node (SA node) over time or may be a result of certain medicines. This can result in heartbeats that are too slow, too fast ⁠— or heartbeats that alternate between slow and fast. (credits Johns Hopkins)

Audrey is 35 years old and has had a life full of health issues, one of the most life altering is Sick Sinus Syndrome which she was diagnosed with while undergoing pretesting for her Hysterectomy at 33. She also has multiple other health issues including POTS, Chronic Autoimmune hives, chronic gastritis, occipital neuralgia. Migraines and more. Though she admittedly struggles physically she maintains a positive outlook through all of this and credits her childhood overseas. She has seen what life in under-privileged countries is like and focuses her mind on positivity and thankfulness that she is able to get the care she gets. Audrey is dedicated to helping others navigate chronic illness (both physical and psychological) and spends her time between dr’s appointments napping and hanging out with her husband and their fur babies.

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Here is some more about Dan:

Dan Dry Dock Shockley, retired U.S. Navy veteran; Operation Desert Storm; Enduring and Iraqi Freedom veteran and 9 hereditary colon cancer WARRIOR.
The U.S. based Colon Cancer Alliance featured his journey for their Veterans Day blog. The below url provided for your reading pleasure:

https://www.ccalliance.org/blog/prevention/dan-drydock-shockley-colon-cancer-warrior-forges-on

Also, in honor of Rare Cancer Day, 30 September, the NORDpod featured him as a special guest.

The below url provided for your listening pleasure:

https://open.spotify.com/episode/6cJJwWXEp34wD8ulFBXNQu?si=m6_V8YwJRwqEAWxXzTp3Cw&utm_source=native-share-menu&dl_branch=1

Additionally, he has been a regular contributor to the UK based Rare Revolution team. They recently invited me to be part of their National Patient Advocate Day campaign. My input can be viewed on Instagram:

https://www.instagram.com/tv/CSwmNDwjuLQ/?utm_medium=copy_link

In closing, here's his latest article which was featured by the Montreal based, RareDIG Organization.

https://www.raredigmcgill.com/HORD/Season-Four

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On today’s show, we are talking about knee replacement surgery with Dawn Richardson, a friend I met in my last couple of years in the Army. Dawn is a retired Navy Captain, former restaurant manager, and former Bed and Breakfast owner who is delighted to say she's now retired and finds fulfillment in her volunteer activities and personal pursuits.

About 4% of people 50 and older have knee replacements. At age 80, that number is above 10%. The average age is 65 and more women than men have knee replacements.

Three facts we were surprised to hear after speaking with Dawn:

You aren’t supposed to travel for 6 weeks
You aren’t supposed to kneel on that knee for 6 months
You shouldn’t have any non-emergency dental work for 6 months to include cleanings

These surgeries have evolved greatly after the use of minimally invasive scope-type surgeries.

Total knee replacement is a type of surgery to replace a damaged knee joint. A minimally invasive surgery uses a smaller cut (incision) than a traditional total knee replacement. This type of surgery typically requires special tools so that the surgery team can see and do the procedure through the smaller incision.

The knee has several parts: the lower end of the thigh bone (femur), the upper end of the shin bone (tibia), and the kneecap (patella). A smooth substance called cartilage caps the ends of these bones and keeps the bones from grinding together. When there is damage to the knee joint, these bones may scrape together abnormally and cause pain.

During minimally invasive total knee replacement, your surgeon makes an incision to access your shinbone and thigh bone. Next, he or she removes a portion of the bones that make up the knee joint. Your surgeon replaces these bone parts with metal components that recreate the joint surface. A layer of plastic is placed between the metal components for smooth gliding.

Minimally invasive total knee replacement often takes place under general or spinal anesthesia. (credits: Johns Hopkins Medical)

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Cerebral palsy is a group of disorders that affect movement and muscle tone or posture. It's caused by damage that occurs to the immature brain as it develops, most often before birth.

Our guest today is Zain Bando, a Chicago area, 21-year-old college student and is studying journalism at the University of Illinois at Urbana-Champaign as a junior. He hopes to pursue a career in broadcasting after graduation and currently resides in Downers Grove, IL with his family.

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This week, we address the reemergence of leprosy, a disease rarely seen until now, with particular attention to the warning by New York University physician Marc K. Siegel. While the United States generally reports only 150 to 250 leprosy cases yearly, globally, 2 to 3 million people grapple with leprosy-related disabilities. Siegel emphasizes the risk in certain US cities, such as Los Angeles, where unsanitary conditions among the homeless population create fertile ground for diseases like leprosy to thrive. Leprosy, caused by Mycobacterium leprae, can spread more easily in overcrowded, unhygienic environments.

Early detection is vital, but homeless individuals often lack access to medical care, risking severe complications if left untreated, including nerve damage, skin lesions, and blindness. Siegel stresses the need for attention to permanent disabilities and the potential for public panic if leprosy takes hold among the homeless population.

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This week we discuss the application of Artificial Intelligence (AI) in medicine is revolutionizing healthcare, contributing to improved outcomes, more efficient processes, and reduced costs.

Here are some key benefits:

Enhanced Diagnostics: AI algorithms, especially those based on deep learning, can analyze complex medical data like X-rays, MRIs, CT scans, and genomics with a high degree of accuracy. They can detect patterns and anomalies that may be invisible to the human eye, or interpret large volumes of data quickly, leading to early and more accurate diagnoses.
Personalized Medicine: AI helps in analyzing data from genetic testing, medical records, and wearable health devices to tailor treatments to individual patients. This personalization can lead to more effective treatment plans and medication, reducing the trial-and-error approach associated with treating complex or rare conditions.
Predictive Analytics: By assessing medical records, social determinants, genetics, and lifestyle data, AI can predict the likelihood of disease and help in preventive medicine. Early intervention in high-risk patients can lead to better health outcomes and reduced healthcare costs.
Drug Discovery and Development: AI expedites the process of drug discovery by analyzing complex biochemical interactions. It helps in identifying potential drug candidates, predicting how they will work, and foreseeing potential side-effects, significantly reducing the time and cost of bringing new drugs to market.
Robotic Surgery and Assistance: AI-enhanced robotic systems can assist surgeons in performing precise and minimally invasive procedures. These systems can provide stability, dexterity, and endurance beyond human capabilities, reducing recovery times, and improving outcomes.
Remote Monitoring and Telehealth: AI-driven applications enable patients to receive medical consultations and monitoring without visiting a clinic. This is especially beneficial for patients in remote areas, those with mobility issues, or during public health crises (like the COVID-19 pandemic).
Administrative Workflow Assistance: AI can automate administrative tasks like scheduling, billing, patient communication, and maintaining records, reducing the workload on healthcare professionals and allowing them to focus more on patient care.
Clinical Trials: AI can identify suitable candidates for clinical trials more efficiently by matching individual health profiles with study criteria. This accelerates recruitment, making the development process for new treatments faster and more effective.
Resource Allocation: In scenarios like pandemic outbreaks, AI can assist in planning and optimizing resource allocation (e.g., ventilators, hospital beds, medical staff) based on predictive modeling of disease spread and healthcare needs.
Reducing Burnout: By taking over routine, time-consuming tasks, AI can reduce the workload for healthcare providers, mitigating burnout and allowing them more time for direct patient interaction and care.

Despite these advantages, it's crucial to approach AI in medicine with caution, considering challenges like data privacy, algorithmic bias, the need for extensive validation, and ensuring the explainability of AI decisions. Moreover, AI should be viewed as a tool to augment human healthcare providers' capabilities, not replace the essential human touch in medicine.

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This week we will discuss mental health impacts from living with a chronic illness with our guest, Christy Amos (aka Christi Winstead)

Christy Amos is a compassionate and resilient individual who has made it her mission to help others navigate the challenges of living with chronic illnesses. With a Master's degree in Counseling, she has acquired a deep understanding of the emotional and psychological impact that chronic conditions can have on individuals and their loved ones.

Despite facing her own health battles, Christy's determination and empathy have driven her to become a patient advocate. Drawing from her personal experiences with multiple chronic illnesses, she uses her expertise to support and empower others in similar situations. Her dedication to improving the lives of those affected by chronic illnesses has made her an invaluable resource in the social health community.

In addition to her advocacy work, Christy is a freelance author. She shares her wealth of knowledge and personal insights on chronic hives and asthma through her contributions to respected platforms such as chronic-hives.com and asthma.net. Her writing not only educates and informs, but also serves as a source of comfort and inspiration for individuals living with these conditions.

Christy's unique perspective as both a patient and a professional counselor allows her to approach chronic illnesses holistically. She understands the complexities of managing physical symptoms while also addressing the emotional and psychological impact of these conditions. Through her writing, counseling, and advocacy efforts, she strives to promote understanding, raise awareness, and facilitate meaningful conversations about chronic illnesses.

Christy's commitment to making a difference in the lives of others shines through in everything she does. Her courage, resilience, and unwavering determination serve as an inspiration to those who have the privilege of knowing her or benefiting from her work. With her profound understanding of the challenges that chronic illnesses present, Christy Amos continues to transform the lives of individuals and families affected by these conditions, bringing hope and support to countless people in need.

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This week we will discuss Eye Safety for children. Eye injuries affect about 2.4 million people every year. Household products cause more than 125,000 serious eye injuries. Hospital emergency rooms treat nearly 23,000 victims of eye injuries from sports. Toys and home playground equipment cause more than 11,000 injuries to young eyes. Below are tips for preventing injury to your child’s eyes.

Here are some tips for eye safety for children:

Avoid sharp, broken toys and objects.
Wear sport goggles and sunglasses.
Do not play around lawn mowing and fireworks.
Avoid BB, pellet, NERF®, and dart guns.
Always carry pointed objects such as scissors, knives or pencils with the sharp end pointing down.
Never shoot objects (including toys) or spray things at others, especially in the direction of the head.
Read and follow directions before playing games or using equipment.
Make sure your child wears safety goggles or glasses during sports and leisure activities.
Make sure your child wears sunglasses that have 100% UV protection.
Only buy toys meant for their age.
Show them how to use their toys safely.
Supervise them when they play.
Look into the durability of lens material.
Ask for warranty information on both the frames and the lenses.

About 90% of eye injuries can be prevented with protective eyewear.

An ophthalmologist, primary care doctor, school nurse or children’s health service should examine the eye as soon as possible, even if the injury seems minor at first, as a serious injury is not always immediately obvious. Delaying medical attention can cause the damaged areas to worsen and could result in permanent vision loss or blindness.

While seeking medical help, care for the child as follows:

DO NOT touch, rub or apply pressure to the eye.
DO NOT try to remove any object stuck in the eye. For small debris, lift eye lid and ask child to blink rapidly to see if tears will flush out the particle. If not, close the eye and seek treatment.
Do not apply ointment or medication to the eye.
A cut or puncture wound should be gently covered.
Only in the event of chemical exposure, flush with plenty of water.

Credits:

URMC / Encyclopedia / Preventing Eye Injuries in Children

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This week we will discuss LED (light-emitting diode) therapy, a type of treatment that uses lights of different wavelengths to treat a variety of skin conditions, such as acne, scar tissue, and the effects of aging. Most commonly, red and blue lights are used for these treatments. Light therapy can be performed in a healthcare provider's office or at home. Multiple treatments are required to get results. There will not be a guest for this week's episode

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This week we will discuss Metabolic Systems with our guest, Francis Fessler.

A certified personal trainer and conditioning coach for the last 25 years, Francis Fessler has built a career by designing programs and coaching professional and amateur athletes, celebrities, business professionals, parents and children to achieve their wellness and fitness goals. Throughout his time in the health and wellness world he evaluated, tried and tested countless ‘diet and nutrition plans’ and could not find one that had consistent results for both women and men- so he built one. Francis created F2 Wellness and the highly successful F2 Weight Loss Program for not only his clients, but for anyone looking for a simple, successful and sustainable weight loss program.

Have you ever experienced tiredness in your muscles while working out and you couldn’t continue exercising after a certain point? Have you wondered what can make you lift heavier weights or run longer than you can today? If you have, understanding the mechanism of the body's energy system can help you find answers to these questions.

Three metabolic pathways generate the energy required to perform an exercise: the phosphagen pathway, the glycolytic pathway, and the oxidative pathway, together known as the energy systems. Although your body is always using all three simultaneously, depending on the intensity and duration of the exercise, your body will choose from which pathway it will use the largest percentage of its energy.

As you may know, all energy used by our bodies is generated from the breakdown of food and drink. The three macronutrients are protein, carbohydrate, and fat. Those are metabolized to create adenosine triphosphate, which is the source of fuel for all body processes, including muscle contraction.

Unfortunately, the supply of readily available ATP is very limited. It means our bodies constantly have to produce the substance; otherwise, muscle contraction would stop. This re-synthesis of ATP is done by the three energy systems.

The first 10 to 20 seconds of high-intensity physical activity is fueled by the “ATP-CP,” also known as the phosphagen energy system. Once the available ATP is used up, which occurs in a few seconds, a molecule called phosphocreatine is used to re-form ATP in the muscle. This energy system operates very quickly and can bring the highest output of the three systems. However, it is limited by the availability of creatine phosphate, which is usually consumed within 15 seconds.

Your body can eventually refill these stores when you rest. This is why this system is most active for athletes who engage in short bouts of very intense, explosive movement, such as a the 50-meter dash or powerlifting. This is also the reason we can sprint at full speed for only a few seconds or lift maximum loads only 1-2 times before requiring rest or a decrease in exercise intensity using another metabolic pathway.

The second pathway, the glycolytic pathway, is the primary energy system used for exercise lasting from 15 seconds to three minutes. People running an 800-meter event, for example, use this pathway the most. This energy system uses the glucose stored in the muscle, broken down primarily from carbohydrates, to form ATP. The benefit of this pathway is that it kicks in quickly, but it doesn’t make very much energy; it can only supply a maximum of about three minutes of energy. This pathway is responsible for the buildup of lactic acid in our muscles, which contributes to fatigue.

For exercise lasting longer than three minutes, the oxidative pathway is used. Unlike the others, this energy system requires oxygen. The increase in respiratory rate meets the oxygen demand during physical activity. The oxidative system is slow, but is also the most efficient. Using fat as its primary energy substrate, it produces enough ATP to sustain longer duration activities, but only at submaximal exercise output. It means fat is the predominant fuel source used during low to moderate-intensity activity, like biking or jogging long distances.

Now you are more knowledgeable on how your body relies on each of these systems working together to meet the energy demands needed for activities of daily living and exercise.

The system your body will use primarily depends on the type of activities you mostly engage in. The more you train in that particular type of exercise, the better your body adapts to being able to efficiently use that energy system.

For example, individuals who have trained in powerlifting can store more phosphocreatine and ATP than a marathon runner or sedentary individual. On the other hand, endurance-trained individuals have better ventilation ability, maximizing oxygen availability for the oxidative pathway. At the end of the day, consistency is key. If you want to excel at a particular type of exercise, just keep doing it and in time, your body will adapt. (Credits: US Army)

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On this week's episode we are running a rare re-run on the aftermath of 9/11.

The tragic events of September 11, 2001, remain etched in the collective memory of not only Americans but also people worldwide. Beyond the immediate devastation, the aftermath of the World Trade Center (WTC) attacks brought forth an enduring health crisis among those who selflessly rushed to aid their fellow citizens. First responders, the courageous individuals who braved the smoke, debris, and toxic fumes of Ground Zero, now face a formidable foe: cancer. This essay delves into the harrowing issue of cancers among first responders as a result of their heroic work at the World Trade Center on 9/11.

The Heroic Sacrifice

On that fateful Tuesday morning in 2001, first responders raced against time to rescue victims, provide medical aid, and extinguish fires at Ground Zero. Their unwavering commitment to their duty and fellow citizens was nothing short of heroic. However, in their pursuit of saving lives and clearing the wreckage, these valiant individuals unwittingly subjected themselves to a hazardous environment, the consequences of which continue to haunt them.

The Toxic Fallout

The collapse of the Twin Towers released a vast plume of dust and debris, laden with a toxic cocktail of chemicals and substances. This included asbestos, lead, dioxins, and various carcinogens. The first responders breathed in these harmful particles, exposing themselves to long-term health risks. Moreover, the fires at Ground Zero burned for months, releasing even more hazardous pollutants into the air, further endangering the health of those on the front lines.

The Alarming Statistics

Over the years, an alarming number of first responders have fallen victim to cancer. The statistics are sobering, with many developing rare and aggressive forms of the disease. A study conducted by the World Trade Center Health Program in 2020 revealed that cancer has become a leading cause of death among 9/11 first responders. The incidence of certain cancers, such as prostate, thyroid, and multiple myeloma, among this group is significantly higher than in the general population.

The Struggle for Recognition and Assistance

First responders who survived the immediate aftermath of 9/11 are now faced with another daunting battle – the fight for recognition and assistance. Many of these heroes have struggled to receive adequate medical care and compensation for their illnesses. The process of proving that their cancer is linked to their exposure at Ground Zero can be arduous, and the burden of proof often falls on the shoulders of the afflicted.

Legislation such as the James Zadroga 9/11 Health and Compensation Act has provided some relief by establishing healthcare programs and compensation for affected individuals. However, the fight for ongoing support and comprehensive healthcare continues, as the prevalence of cancer cases among first responders only grows.

The Psychological Toll

Beyond the physical health challenges, the psychological toll on first responders cannot be understated. Witnessing the loss of colleagues and experiencing the long-term health impacts has led to significant mental health struggles within this community. Many suffer from post-traumatic stress disorder (PTSD) and anxiety, adding to the already burdensome weight of their physical ailments.

The cancers afflicting the first responders who valiantly served at the World Trade Center on 9/11 represent a tragic and enduring consequence of that fateful day. These individuals sacrificed their health and well-being in the pursuit of saving lives and aiding their fellow citizens. As a society, it is our moral duty to recognize their sacrifice, provide them with the necessary medical care and support, and continue research to better understand and combat the long-term health effects of their selfless actions. The cancers among first responders of 9/11 are a stark reminder that their heroism should never be forgotten, and their needs should always be a priority.

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This week we will discuss being Bi-Polar with Kitt O'Malley.

Kitt is an author, mental health advocate, and former psychotherapist who lives with bipolar disorder. Both her personal experience and clinical background inform her writing and enable her to help herself and guide others toward mental health recovery. She has a bachelor's in legal studies from UC Berkeley, a master's in psychology from New College of California, and has attended seminary. Visit kittomalley.com for more information.

BOOK

"Balancing Act - Writing Through a Bipolar Life" offers hope to those living with mental health conditions and their loved ones. As a therapist who left her career due to a mental health crisis, O'Malley educates the public about mental health and fights stigma against those living with mental health conditions by challenging stereotypes.

O'Malley's writing recounts her struggle with bipolar disorder, the two decades it took to receive a proper diagnosis, and how her journey gave her purpose. O'Malley balances living with bipolar disorder with her work as a mental health advocate and former caretaker of her son and parents.

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This week we will discuss Young Onset Parkinson's with Jennifer Crowder.

Jennifer has been living in the uncomfortable space of not using her career or family role to define herself for many years. Instead, she describes who she is as a person - she is tenacious, creative, stubborn, sarcastic, relentless, driven, compassionate, and courageous. Her proudest moments are making people laugh when they least expect it and finding a quick and simple solution to a complex problem. She spends most of her time in a boxing gym or carving eggshells. She has been living with Parkinson's disease for 27 years.

In reference to advice about starting rock Steady Rock Steady, Jennifer wanted you to know...

*Don't wait until you feel good to go.

*Go when you're tired.

*Nauseated

*In pain

With this disease, if you wait to feel good enough to go, you'll never go. The first few weeks are undeniably hard. Pain and fatigue from the workouts, pain and fatigue from the disease. But if you stick with it- go every class you can and give 100% each workout, the disease symptoms reduce. I'd rather have the pain from a good workout. It allows a more productive life.

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This week we will discuss lasting symptoms months after catching COVID-19, also known as long COVID. A recent study has found Long COVID more than doubles a person’s likelihood of developing cardiovascular issues. (credits: https://bit.ly/45gJq4e ) We will not have a guest on this episode. If you or someone you know has Long COVID and had a healthy circulatory system until recently we would love to have you as a guest for a future episode.

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This week we will discuss a serious motility disorder: Gastroparesis.

Our guest is a strong advocate for this community and we are honored to have her join us today. Melissa Adams VanHouten is a wife, mother, and former university political science instructor and corporate trainer who holds a B.S. in Political Science from St. Joseph's College and an M.A. in Political Science from Indiana State University. After being diagnosed with gastroparesis in February of 2014, she became a passionate advocate for those in her community who feel voiceless and ignored. She currently serves as the Association of Gastrointestinal Motility Disorders (AGMD) Public Policy and Outreach Director. She is also the co-author of the book, "Real Life Diaries: Living with Gastroparesis," and manages several online patient support and advocacy groups, the largest of which serves more than 46,000 members. She spends her days advancing the cause of those who struggle with the sometimes devastating and life-altering effects of gastroparesis, and it is her fondest desire to empower others to advocate for awareness, better treatments, and, ultimately, cures.

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This week we will discuss a new rapid response test for Sepsis with one of the developers, Richard Brandon.

Sepsis describes a syndrome that occurs when severe infection results in critical illness and affects 750,000 Americans annually. Sepsis occurs when a bacterial, viral, or fungal infection causes a significant response from the body’s immune system, causing a high heart rate, fever, or fast breathing. Severe sepsis develops when the infection causes organ damage. Septic shock is the most severe form in which the infection causes low blood pressure, resulting in damage to multiple organs. About three in every 10 patients with severe sepsis, and half of those with septic shock, die in the hospital.

Consider asking the following questions:

“Does my loved one have sepsis or septic shock?”

“Do we know what organism is causing the infection in my loved one?”

“Do we know where the infection came from?”

“How well are my loved one’s organs working?”

Antibiotics and intravenous (IV) fluids are two of the most important treatments for sepsis. Studies have shown that delays in receiving the right antibiotics can double the risk of death. Patients are usually started on antibiotics that treat many different types of bacteria—“broad-spectrum antibiotics”—until test results are available to help physicians select antibiotics that treat the specific bacteria causing the
illness—“narrowing antibiotics”. These tests are often referred to as “cultures”, where bodily fluids such as blood, urine, and phlegm, are sent to the laboratory to identify disease-causing bacteria. Preliminary results from cultures may be available within 24 to 48 hours; final results from these tests often take several days. (credits: ATS)

Time is critical as you can see! With Richard Brandon's new test, the results are rapid!!

Richard Brandon Chief Scientific Officer – BVSc (Hons), PhD, MBA

35 years’ experience – veterinary immunologist, molecular biologist, pathologist, animal and human healthcare R&D executive: Cornell, Sloan Kettering Cancer Research, University of Queensland, various private pathology laboratories, Genetrax, Plasvacc, BioNiche. A listed inventor on most Immunexpress patents; architect of IP strategy.

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On today’s show, we are talking about the complex world of multiple chronic illnesses once again with Anna Cooper. Anna is a 35-year-old female who has an independent spirit inside of a body that holds an alphabet of health conditions. Anna worked as a case manager for individuals with intellectual and developmental disabilities, where she loved to advocate for her clients. When her health forced her to take a step back from working, things have been rough as she looks for a new way to advocate for herself and for others.

The Difficult illness we will discuss today is Mast Cell Activation Syndrome or MCAS. According to the National Institute of Health: Mast cell activation syndrome (MCAS) causes a person to have repeated severe allergy symptoms affecting several body systems. In MCAS, mast cells mistakenly release too many chemical agents, resulting in symptoms in the skin, gastrointestinal tract, heart, respiratory, and neurologic systems. Mast cells are present throughout most of our bodies and secrete different chemicals during allergic reactions. Symptoms include episodes of abdominal pain, cramping, diarrhea, flushing, itching, wheezing, coughing, lightheadedness and rapid pulse and low blood pressure. Symptoms can start at any age, but usually begin in adulthood. The cause of MCAS is unknown. Diagnosis is based on the symptoms, clinical exam, and specific laboratory testing. Other conditions may need to be excluded before MCAS can be diagnosed.

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This week we will discuss Achalasia of the Esophagus

Achalasia occurs when nerves in the esophagus become damaged. As a result, the esophagus becomes paralyzed and dilated over time and eventually loses the ability to squeeze food down into the stomach. Food then collects in the esophagus, sometimes fermenting and washing back up into the mouth, which can taste bitter. Some people mistake this for gastroesophageal reflux disease (GERD). However, in achalasia the food is coming from the esophagus, whereas in GERD the material comes from the stomach.

There's no cure for achalasia. Once the esophagus is paralyzed, the muscle cannot work properly again. But symptoms can usually be managed with endoscopy, minimally invasive therapy or surgery. (Credits: Mayo Clinic)

Our guest on this episode is Bridget Oyen, known in the TikTok world as @LiveSickDieslowly.

Bridget is 30 years old and has been struggling with Achalasia since the age of 15. In addition to that, she has Gastroparesis, Fibromyalgia, and is Autistic and ADHD. She is an advocate for the disabled community, and loves to help educate others on how to be mindful in regards to disability and chronic illness, and aims to break down stigma surrounding these topics.

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This week we will discuss the complexity of being chronically ill with multiple diagnoses. Our guest for this week is Christy Amos, a compassionate and resilient individual who has dedicated her life to helping others navigate the challenges of living with chronic illnesses. Despite her own battles with multiple chronic health conditions, she has become a powerful patient advocate, leveraging her personal experiences to support and empower others. As a freelance author, she shares her expertise and insights on living with chronic conditions, providing education, comfort, and inspiration to those affected.

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In this episode we will discuss Vectors. Specifically MOSQUITOES!

Mosquitoes cause more human suffering than any other organism -- over one million people worldwide die from mosquito-borne diseases every year. Not only can mosquitoes carry diseases that afflict humans, they also transmit several diseases and parasites that dogs and horses are very susceptible to. These include dog heartworm, West Nile virus (WNV) and Eastern equine encephalitis (EEE). In addition, mosquito bites can cause severe skin irritation through an allergic reaction to the mosquito's saliva - this is what causes the red bump and itching. Mosquito vectored diseases include protozoan diseases, i.e., malaria, filarial diseases such as dog heartworm, and viruses such as dengue, encephalitis and yellow fever. CDC Travelers' Health provides information on travel to destinations where human-borne diseases might be a problem. (from the American Mosquito Association)

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This week we will discuss a rare type of cancer. Our guest on today's show is Chris White. Mucosal melanoma is a rare but aggressive disease usually diagnosed in advanced stages. Unlike most melanomas, which start in the skin, mucosal melanoma starts in the moist membranes that line the inside of the body, including the digestive tract.

All melanomas start in pigmented cells called melanocytes. Mucosal melanoma accounts for 1.4 percent of all melanomas, according to a 2018 review in Melanoma Management.

Most mucosal melanoma cases start in the lining of the head, neck, anus, vagina or vulva. Cases inside the gastrointestinal tract are less prevalent.

The disease may be called invasive if it’s spread deep into the tissue and metastatic if it’s spread to distant parts of the body, such as the liver or lungs.

Mucosal melanoma hasn’t been linked to any specific causes. Generally, older people are diagnosed, with the median age being 70. While the rate of skin melanoma cases has risen in the past 20 years, the rate of mucosal melanoma has always been fairly similar over time.

More About Our Guest

Chris's story begins in Colorado Springs where he was born in 1982. His parents and two siblings moved to Irvine California where he grew up before moving to North Texas. He received his Associates of Arts degree at Collin College, followed by his BA at University Texas Dallas in 2005. After college, his career path included time in the in the oil and gas industry, working with independent SAP contract consultants as well as working in the Golf department at Gleneagles Country Club in Plano, Texas. His career path took a turn in 2016 when he worked in the home building industry as a construction manager. An avid snowboarder, he has always been active, enjoying outdoor activities.

His cancer journey began in the summer of 2018 when what he had believed was a hemorrhoid actually turned out to be cancer. Not just any cancer, but the diagnosis was Anorectal Mucosal Melanoma which is an extremely aggressive cancer with a low survival rate. The following months included multiple surgeries, immunotherapies, chemotherapy and radiation. Despite the treatments, the cancer had metastasized throughout his body to his lungs, liver, kidneys and brain. His health was declining rapidly, and without any other options, he was fortunate enough to qualify as the last patient admitted to a TILs Therapy Clinical Trial at the University of Colorado Health Cancer Care located at the Philip Anschutz Medical Campus in Aurora Colorado. The TILs therapy was done in January of 2020 and within less than a year the tumors were gone. Not in remission but gone. The TILS therapy is revolutionary in that it eradicates the tumor rather than leaving it dormant. This clinical trial for TILS therapy saved his life. He was able to go back to work in homebuilding but realized his passion is sharing his cancer survival story.

Currently he works as a Certified Melanoma Educator through the Melanoma Research Foundation. He is involved with many melanoma patient advocacy groups throughout the world listening to other stories while sharing his own via group chats, industry panels and forums any format that can offer some patient the comfort that there may a cure for their cancer. Any contribution to the MRF aids the fight against Melanoma and Chris thanks you for your support and generosity.

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This week we will discuss Palliative vs Hospice with Dr. Karl Steinberg.

Palliative Care, Hospice Care, End-of-Life Care, Serious Illness Care, and Advance Care Planning/POLST all represent important elements of care for individuals dealing with serious illness, particularly those facing end-of-life situations. These are related but distinct concepts within the healthcare system.

Palliative Care: This is a type of care that is focused on providing relief from the symptoms and stress of a serious illness. The goal is to improve the quality of life for both the patient and the family. Palliative care is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment. It's not limited to end-of-life scenarios and can help patients manage symptoms and side effects of disease or its treatment.
Hospice Care: This is a specific type of palliative care for patients who are in the final stages of an incurable disease and have chosen to focus on comfort and quality of life rather than treatments aimed at cure. Generally, hospice care is considered when patients have a life expectancy of 6 months or less. It is often provided in the patient's home but can also be provided in hospice centers, hospitals, long-term care facilities, and nursing homes.
End-of-Life Care: This refers to the support and medical care given during the time surrounding death. End-of-life care can include a broad range of possible treatments and support, depending on the patient's needs. It might include treating pain and other uncomfortable symptoms, providing emotional and spiritual support, and helping the patient and their family make decisions about care. Both palliative and hospice care can be part of end-of-life care.
Serious Illness Care: This is a broad term that includes all types of care that someone with a serious, potentially life-limiting illness may receive. This can include everything from aggressive treatments aimed at curing or controlling the disease to palliative and hospice care aimed at managing symptoms and improving quality of life.
Advance Care Planning/POLST (Physician Orders for Life-Sustaining Treatment): Advance Care Planning involves making decisions about the care you would want to receive if you become unable to speak for yourself. These decisions are often documented in an advance directive. A POLST form is a type of advance directive that becomes an actionable medical order when signed by a healthcare provider. The POLST form helps ensure that a patient's wishes regarding life-sustaining treatments are honored by emergency medical personnel, nursing home staff, and healthcare providers.

All of these concepts share a common goal: to ensure the best possible quality of life for patients facing serious illnesses, while respecting their values, preferences, and goals for care.

About Our Guest

Dr. Karl Steinberg has been a nursing home, hospice, and home health agency medical director and chief medical officer in the San Diego area since 1995. He received his bachelor’s in biochemistry from Harvard and studied medicine at The Ohio State University College of Medicine, then completed his family medicine residency at University of California San Diego (UCSD) in 1990. He has board certifications in family medicine and in hospice and palliative medicine, and is certified as a nursing home and hospice medical director in addition to having a certification as a healthcare ethics consultant.

Dr. Steinberg also serves as president of the National POLST Collaborative, and is a past president of AMDA and CALTCM and past chair of the San Diego and California Coalitions for Compassionate Care. He serves on the National Advisory Board for the CSU Shiley Haynes Institute for Palliative Care and is the recipient of the 2022 Doris Howell Award for Excellence in Palliative Care.

Dr. Steinberg is on the Board of Directors of the San Diego County Medical Society and serves as a delegate to the AMA and California Medical Association’s House of Delegates. He is also an appointee to the California Insurance Commissioner’s Long-Term Care Insurance Task Force.

Dr. Steinberg enjoys presenting at educational conferences to professional audiences and the public, and also serves as a consultant and testifying expert witness in civil lawsuits and regulatory matters. He hosts two podcasts for AMDA, called JAMDA-on-the-Go and Caring-on-the-Go. Dr. Steinberg is perhaps best known for taking his poodles on nursing home rounds with him.

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This week we will discuss processed food addiction. This is a rerun of an episode we posted awhile back.

Dr. Ifland has been creating breakthroughs in recovery from food addiction from 1999 with her first popular book to 2018 when her textbook, Processed Food Addiction: Foundations, Assessment, and Recovery was released by CRC Press.

She founded the online Addiction Reset Community (ARC) in 2016, www.foodaddictionreset.com. The Facebook group, ‘Food Addiction Education’ (2014) and www.foodaddictionresources.com (2014) provide free support. Reset Week is the first online live video program for withdrawal (2018). ARC Manager Training is a program training future Addiction Reset Community leaders (2020).

Dr. Ifland is the lead author of the first scholarly description of processed food addiction and definition of addictive foods.

Social Media links:

https://www.facebook.com/groups/1806154526275515

https://twitter.com/JoanIfland

https://www.instagram.com/foodaddictionreset/

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This week we will discuss POTs once again with a new guest, Maddie Connell. Maddie is a 27 year old who works in Veterinary neurology and neurosurgery studying to become a Veterinary Neurologist herself. She runs a popular TikTok to raise awareness and provide research based information on Ehlers Danlos, POTs, Mast Cell Activation Syndrome and Complex PTSD.

Postural orthostatic tachycardia syndrome (POTS): A disorder that causes problems with circulation (blood flow), POTS can cause your heart to beat too fast when you stand up. It can lead to fainting, chest pain and shortness of breath. It is one of the 5 types of Dysautonomia.

Dysautonomia is a general term for a group of disorders that share a common problem – that is, an autonomic nervous system (ANS) that doesn’t function as it should. The ANS is the part of the nervous system that controls involuntary body functions (functions you don’t consciously control) like your heart rate, blood pressure, breathing, digestion, body and skin temperature, hormonal function, bladder function, sexual function and many other functions.

When the ANS doesn’t work the way it should, it can cause heart and blood pressure problems, breathing trouble, loss of bladder control and many other problems.

Dysautonomia happens when the nerves in your ANS don’t communicate as they should. When your ANS doesn’t send messages or receive messages as it should or the message isn’t clear, you experience a variety of symptoms and medical conditions.

Dysautonomia can affect ANS functions including:

Blood pressure.
Breathing.
Digestion.
Heart rate.
Kidney function.
Pupil dilation and constriction in the eyes.
Sexual function.
Body and skin temperature control.

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This week we are repeating our episode on Crohns Disease and Trauma. Casey Hersch explains how childhood trauma could be the reason your gut is a mess! We have heard of the brain/gut connection, Casey explains it in some detail on this episode.

Casey Hersch, MSW, LCSW, is a licensed clinical social worker, author, and founder of www.lightyoursparkle.life. She specializes in integrative treatment models for chronic illness. Inspired by her own struggles with autoimmune illnesses and trauma, she educates about empowerment and how to build individualized healing plans.

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This week our Co-Host and producer is the guest once again! The topic for this week is Pulmonary Embolism, which is a blood clot or thrombus in the lung.

A pulmonary embolism (PE) is a sudden blockage in a lung artery. It usually happens when a blood clot breaks loose and travels through the bloodstream to the lungs. PE is a serious condition that can cause:

Permanent damage to the lungs
Low oxygen levels in your blood
Damage to other organs in your body from not getting enough oxygen

PE can be life-threatening, especially if a clot is large, or if there are many clots.

What causes a pulmonary embolism (PE)? The cause is usually a blood clot in the leg called a deep vein thrombosis that breaks loose and travels through the bloodstream to the lungs.

Who is at risk for a pulmonary embolism (PE)? Anyone can get a pulmonary embolism (PE), but certain things can raise your risk of PE:

Having surgery, especially joint replacement surgery
Certain medical conditions, including
- Cancers
- Heart diseases
- Lung diseases
- A broken hip or leg bone or other trauma
Hormone-based medicines, such as birth control pills or hormone replacement therapy
Pregnancy and childbirth. The risk is highest for about six weeks after childbirth.
Not moving for long periods, such as being on bed rest, having a cast, or taking a long plane flight
Age. Your risk increases as you get older, especially after age 40.
Family history and genetics. Certain genetic changes that can increase your risk of blood clots and PE.
Obesity

What are the symptoms of a pulmonary embolism (PE)? Half the people who have pulmonary embolism have no symptoms. If you do have symptoms, they can include shortness of breath, chest pain or coughing up blood. Symptoms of a blood clot include warmth, swelling, pain, tenderness and redness of the leg.

How is a pulmonary embolism (PE) diagnosed? It can be difficult to diagnose PE. To make a diagnosis, your health care provider will:

Take your medical history, including asking about your symptoms and risk factors for PE
Do a physical exam
Run some tests, including various imaging tests and possibly some blood tests

What are the treatments for a pulmonary embolism (PE)? If you have PE, you need medical treatment right away. The goal of treatment is to break up clots and help keep other clots from forming. Treatment options include medicines and procedures.

Medicines:

Anticoagulants, or blood thinners, keep blood clots from getting larger and stop new clots from forming. You might get them as an injection, a pill, or through an I.V. (intravenous). They can cause bleeding, especially if you are taking other medicines that also thin your blood, such as aspirin.
Thrombolytics are medicines to dissolve blood clots. You may get them if you have large clots that cause severe symptoms or other serious complications. Thrombolytics can cause sudden bleeding, so they are used if your PE is serious and may be life-threatening.

Procedures:

Catheter-assisted thrombus removal uses a flexible tube to reach a blood clot in your lung. Your health care provider can insert a tool in the tube to break up the clot or to deliver medicine through the tube. Usually you will get medicine to put you to sleep for this procedure.
A vena cava filter may be used in some people who cannot take blood thinners. Your health care provider inserts a filter inside a large vein called the vena cava. The filter catches blood clots before they travel to the lungs, which prevents pulmonary embolism. But the filter does not stop new blood clots from forming.

Can pulmonary embolism (PE) be prevented? Preventing new blood clots can prevent PE. Prevention may include:

Continuing to take blood thinners. It's also important to get regular checkups with your provider, to make sure that the dosage of your medicines is working to prevent blood clots but not causing bleeding.
Heart-healthy lifestyle changes, such as heart-healthy eating, exercise, and, if you smoke, quitting smoking
Using compression stockings to prevent deep vein thrombosis (DVT)
Moving your legs when sitting for long periods of time (such as on long trips)
Moving around as soon as possible after surgery or being confined to a bed

(Credits: NIH)

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This week we will discuss the topic of Diagnostic Radiology. The error rate of radiology is 4% world wide which comes out to be 40 million interpretive errors a year. Errors in diagnostic radiology occur for a variety of reasons related to human error, technical factors and system faults. It is important to recognize that various cognitive biases contribute to these errors.

Cognitive biases have a complex and significant impact on the perception of examinations within diagnostic radiology, with the clear and present danger of diagnostic errors. The following are some of the more common cognitive biases that can affect day-to-day decision making

Alliterative bias Alliterative bias (sometimes called satisfaction of report) is the tendency for your diagnostic impression to be unduly influenced by the prior interpretation made by another radiologist or clinician. It is a type of confirmation bias and it can result in the same incorrect impression being propagated from one radiologist to the next. Formulating your own interpretation before reviewing any prior imaging reports may help reduce alliterative bias.

Anchoring bias Anchoring bias is the tendency for your initial impression to unduly influence your evaluation of subsequently collected information. Careful assessment of all imaging findings prior to formulating a diagnosis and consideration of alternate diagnoses may help minimize anchoring bias.

Automation bias Automation bias is the tendency for reporters using computer-aided decision support to over rely on the software for the diagnosis, and to ignore their own opinions 2. Making your own assessment prior to reviewing the computer-aided findings, and knowing the limitations of the automated software, can help reduce this bias.

Availability bias Availability bias refers to the tendency for your diagnostic judgements to be unduly influenced by information or experiences that are readily recalled in your mind. Use of information sources beyond your own personal experience, such as publications or an opinion from colleagues, may help to minimize availability bias.

Bandwagon effect The bandwagon effect (sometimes termed diagnosis momentum) refers to the tendency for you to do or think as others do, simply because that's what others are doing. Applying your own judgment and not dismissing your own opinion can help avoid this bias.

Confirmation bias Having a predetermined diagnosis in mind, then looking for evidence that supports this predetermined idea. Alliterative errors 3, sometimes referred to as satisfaction of report errors, are caused by the tendency to overvalue previous reports, and can be conceptualised as a type of confirmation bias.

Framing bias Framing bias refers to the tendency to be unduly influenced by how a clinical question is asked or how the problem is presented. For example, a request form that presents a succinct history that perfectly matches a particular pathology, may influence your interpretation of the imaging. Reviewing the images prior to reading the clinical indication can help avoid any influence. Obtaining more detailed clinical information via the electronic medical record may help provide you with a more balanced assessment of the clinical situation.

Hindsight bias Hindsight bias is the tendency to overestimate the prior predictability of an event (eg. a diagnosis) after the event is known. In other words, the difficulty of making the correct diagnostic decision initially is retrospectively de-emphasized, after the diagnosis has been proven. It is also informally termed as the “I knew it all along” or "retrospectoscope" bias 5. It is important to be conscious of this bias so that you are not overly critical of yourself or others when quite reasonable errors are made.

Outcome bias A tendency to favor a less severe diagnosis based on empathy for a patient.

Representativeness bias Making a judgment on an aspect of an image that is based on one's own perception of what that represents. Representativeness bias as the description suggest can also be heuristic in nature.

Search satisfaction Search satisfaction is the tendency to prematurely stop searching after early findings satisfy the reader that the diagnosis or symptoms can be explained. Satisfaction of search (SOS) errors have been reported to account for 22% of diagnostic errors 4. A systematic approach to image interpretation and review of check areas and not-to-miss diagnoses can help to reduce this bias.

Zebra retreat bias A reader will not make a rare diagnosis, which is otherwise supported by the available evidence due to a lack of confidence.

There are businesses that do "second opinion" reads, here are links for two such companies for your use: www.ndximaging.com www.xmri.com

(Credits Radiopedia

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This week we will discuss an extremely rare type of cancer that is most often associated with younger children. When it affects adults it is more difficult to treat. Our guest this week is Wilder McNemar. Wilder has a decent following on TikTok which is where I found him. You can follow him here: https://www.tiktok.com/@queerpple?lang=en

A Rhabdomyosarcoma is a type of soft tissue sarcoma. A sarcoma is a tumor that starts in the supporting tissues (connective tissues) of the body - for example, bone, muscle, fat, cartilage and ligaments.

Rhabdomyosarcomas grow in the muscles of the body. Rhabdomyosarcoma can occur anywhere in the body.

There are three types of rhabdomyosarcoma which affect different age groups:

Embryonal Rhabdomyosarcoma (ERMS)

This most often affects young children, usually under the age of 6 years. It most often occurs in the head and neck region, especially in the tissues around the eye (called an orbital rhabdomyosarcoma). Embryonal Rhabdomyosarcoma may also occur in the womb, vagina, bladder or the prostate gland. One type of Embryonal Rhabdomyosarcoma is called sarcoma botryoides, which looks like a bunch of grapes and most often occurs in the vagina or bladder.

Embryonal Rhabdomyosarcomas usually spread to surrounding tissues. However, the outcome (prognosis) is usually very good and most children with Embryonal Rhabdomyosarcoma are cured of the cancer.

Alveolar Rhabdomyosarcoma

This tends to occur in older children and young adults. Alveolar Rhabdomyosarcomas (also called ARMS) most often occur in the arms and legs, chest or tummy (abdomen). This is the type Wilder is working with.

ARMS typically affects all age groups equally. It makes up a larger portion of RMS in older children, teens, and adults than in younger children (because ERMS is less common at older ages).

ARMS most often occurs in large muscles of the trunk, arms, and legs.

ARMS tends to grow faster than ERMS, and it usually requires more intense treatment. However, in some cases of ARMS, the cancer cells lack certain gene changes, which makes these cancers act more like ERMS (and allows doctors to give less intense treatment).

Pleomorphic Rhabdomyosarcoma

This tends to occur in middle-aged adults. It is usually treated with chemotherapy, surgery and radiotherapy but treatment is not as effective as for other types of Rhabdomyosarcoma.

We will keep Wilder in our thoughts and prayers and if you are interested in making a donation, there's a link on Wilder's TikTok account: https://www.tiktok.com/@queerpple?lang=en .

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This week we will discuss HIV and Congenital Heart Defects. Seem like an unlikely pair?

First we dive deep into the world of congenital heart defects, specifically focusing on the rare and life-altering condition known as Transposition of the Great Arteries (TGA). Our special guest, Derek Canas, has not only lived with this complex heart defect but has also experienced firsthand the consequences of a tainted blood transfusion in the 1970s, before routine screening for diseases in blood was standard practice. This led to a devastating HIV diagnosis, forever changing Derek's life.

Join us as we hear Derek's incredible journey of perseverance, strength, and advocacy, while also learning about the challenges that came with living with TGA and managing HIV in a time of great stigma and limited medical knowledge. This is a story you don't want to miss, so stay tuned for a heartrending and enlightening conversation.

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This week we will discuss Parkinson's Disease (PD) from the caregiver perspective with Terri Pease.

Before she met her husband (Peter), who already had PD when they met, Terri was working flat-out, traveling around the country, as a trainer and consultant for organizations and staff that support survivors of domestic violence and sexual violence. She was ready to slow down a little and started dating. Despite knowing that Peter had Parkinson’s Disease (PD), she was intrigued by his story and the twinkle in his eye. Within a year they married, and she began the journey that led to her life today, as an author, consultant, and coach for those who care for spouses who have Parkinson’s and related neurological conditions.

She wrote her new book, "Love, Dignity and Parkinson’s: from Care Partner to Caregiver" to be the book she needed.

She found that PD caregivers largely carry on in isolation and uncertainty. It’s her mission to end that by helping to make life smoother and ease loneliness for caregivers of People with Parkinson's.

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This week we will discuss Social Security Disability Benefits with our guest David Dodge.

David Dodge is the Case Manager at Community Action of Orleans and Genesee in Batavia, NY. Prior to this role, David was an Independent Living Specialist and Facilitated Enroller at Independent Living of the Genesee Region. At Independent Living, David earned his Work Incentive Practitioner credential from Cornell University. David serves as the Vice President of the Genesee County Interagency Council, a consortium of providers, Secretary of GLOW Out, a four-county LGBTQ+ advocacy group, member of the Domestic Violence Taskforce, and member of the Batavia Lions Club. David lives in Le Roy, NY with two extremely sassy cats.

One point of contention I had in my mind as a bias was concerning the doctors that examine you in order to be considered medically un-employable. David put my worries to rest when he details the process which you can also find here:

A consultative exam specifically evaluates your health to confirm it matches what you said in your SSD claim. The doctor who performs the exam will:

Look for evidence that supports your SSD claim (or contradicts it). This may include running tests, having you answer some questions, ordering x-rays/MRI or CT scans, etc.
Document whether your condition, illness, or injury might prevent you from working like you normally would. This includes listing reasons why you can’t perform your normal job duties full-time or do other work.

This is not an exam that your family doctor can likely perform. Why? Because the SSA must certify a doctor to perform that specific exam according to their rules and regulations. Every doctor who does consultative exams is independent of the SSA. Instead, this doctor works as a contractor with the SSA to perform these exams in addition to their own personal practice.

I consider this to be a very important topic and I hope it assists those with Long COVID as they trudge through the system for monetary relief!

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This week we will discuss CIDP with Ashley. Ashley also know as "Wheelinwoman" on Instagram and TikTok. "I have a few rare diseases that caused me to have health issues including a spinal cord injury which left me a quadriplegic. I spread awareness and education on life with Guillian Barre syndrome and CIDP. And share my journey wheelin' through life as a young woman!"

Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) is a rare autoimmune disorder that affects the peripheral nervous system. It is characterized by chronic inflammation of the nerves and destruction of the myelin sheath that surrounds and protects the nerves, leading to muscle weakness and sensory disturbances.

CIDP can affect people in different ways, and the symptoms can vary from person to person. Some people may experience mild symptoms, while others may experience more severe symptoms.

Common symptoms of CIDP include

Muscle weakness, particularly in the arms and legs
Tingling or numbness in the hands and feet
Loss of reflexes
Difficulty walking
Fatigue
Pain in the limbs
Difficulty with coordination and balance

The severity and duration of symptoms can also vary, with some people experiencing intermittent episodes of symptoms while others experience more persistent symptoms. Treatment for CIDP typically involves immunosuppressive therapies to reduce inflammation and protect the nerves, but the specific treatment approach will depend on the individual case and the severity of the symptoms.

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Our guest this week is Dr. Casey Kelley. Board Certified in Family Medicine, Dr. Kelley was among the first physicians to become Board Certified in Integrative Medicine. She has studied the causes, effects, and treatments of Lyme Disease extensively, and lectures nationally on this and other topics.

Dr. Kelley graduated from The Ohio State University College of Medicine and completed her residency in Family Medicine at St. Joseph Hospital in Chicago. She is a ten-year member of the Institute of Functional Medicine (IFM), a Director on the board of The International Lyme and Associated Disease Society (ILADS), and is a Founding Member of the Academy of Integrative Health and Medicine (AIHM). Dr. Kelley is on the faculty at the Feinberg School of Medicine at Northwestern University.

Prior to founding Case Integrative Health, Dr. Kelley practiced medicine at WholeHealth Chicago, Michigan Avenue Immediate Care, and St. Joseph Hospital.

Tick-borne pathogens can be passed to humans by the bite of infected ticks. Ticks can be infected with bacteria, viruses, or parasites. Some of the most common tick-borne diseases in the United States include: Lyme disease, babesiosis, ehrlichiosis, Rocky Mountain Spotted Fever, anaplasmosis, Southern Tick-Associated Rash Illness, Tick-Borne Relapsing Fever, and tularemia. Other tick-borne diseases in the United States include: Colorado tick fever, Powassan encephalitis, and Q fever. Lyme disease is the most commonly reported tick-borne disease in the United States. In 2010, more than 22,500 confirmed and 7,500 probable cases of Lyme disease were reported to the Centers for Disease Control and Prevention (CDC).

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This week we will discuss product recalls and your health. According to WEBMD: A product safety recall happens when a consumer watch group or a manufacturer finds problems with a product.

Lots of items can be recalled.

Some products that are commonly recalled include:

Food products, like meat or vegetables
Medication and medical devices
Children’s products, like safety seats
Car parts

If an item is recalled, you may have to throw it away, return it, or exchange it for a similar or newer product.

Did you know that in the United States, six federal agencies have now joined forces to provide better service in alerting the populace of unsafe, hazardous or defective products. That website is simply Recalls.gov! At least they made that part very easy to remember! I'll put links on our website for more detailed information.

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This week we are revisiting a marvelous guest we had on last year.

With Long Covid now dominating the healthcare news, what a great time to get on board with a new protocol to help re-calibrate your nervous system?!

Marci Bene, is a health coach from Hungary with a focus on the human nervous system and after he suffered through Covid a couple months back he created a protocol to bounce back from the after-effects of this virus.

Thanks to it he recovered quickly. He is trying to reach out to as many as he can to educate on the functions and workings of the nervous system. The protocol was designed so that anyone can do it and the results can be measured in days not months.

Long COVID is real, and we believe in getting as much information to our listeners as possible. If Marci can help, it's a good day for folks suffering the after effects of COVID!

As always, check with your doctor first.

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First off, apologies from our team for the late posting, I had a sudden medical emergency myself that put me in the hospital. But... we are back and will be posting a new episode on that incident in the near future! Thank you for trusting us to return to show production, even if we are 30 hours late!

We are running with back to back reruns based on listeners requests. For this week's show, let me re-introduce you to Meg Pecora from our first season in July of 2018. At the time Meg was a recent college graduate from Columbia in Chicago. Now she is a recently engaged artist with chronic pain due to Fibromyalgia. She was approved for the Illinois medical cannabis program and discusses the process of obtaining the authorization and finally "prescription" for medical cannabis as a pain reliever.

Medical marijuana uses the marijuana plant or chemicals in it to treat diseases or conditions. It's basically the same product as recreational marijuana, but it's taken for medical purposes.

The marijuana plant contains more than 100 different chemicals called cannabinoids. Each one has a different effect on the body. Delta-9-tetrahydrocannabinol (THC) and cannabidiol (CBD) are the main chemicals used in medicine. THC also produces the "high" people feel when they smoke marijuana or eat foods containing it.

"The greatest amount of evidence for the therapeutic effects of cannabis relate to its ability to reduce chronic pain, nausea and vomiting due to chemotherapy, and spasticity [tight or stiff muscles] from MS," Bonn-Miller says.

Medical marijuana received a lot of attention a few years ago when parents said that a special form of the drug helped control seizures in their children. The FDA recently approved Epidiolex, which is made from CBD, as a therapy for people with very severe or hard-to-treat seizures. In studies, some people had a dramatic drop in seizures after taking this drug.

The cannabidiol Epidiolex was approved in 2018 for treating seizures associated with two rare and severe forms of epilepsy, Lennox-Gastaut syndrome and Dravet syndrome. In addition, the FDA has approved two man-made cannabinoid medicines -- dronabinol (Marinol, Syndros) and nabilone (Cesamet) -- to treat nausea and vomiting from chemotherapy.

(credits: WEBMD & Marcel Bonn-Miller Ph.D.)

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Everyone has heard of a misdiagnosis. Either radiology doesn't catch something on a scan, or perhaps the M.D. misses a lump or a mark during exam. But when it comes to diagnosing deadly disease like cancer, you don't want it to get missed, especially twice for two different cancers!

Cancer misdiagnosis may occur due to human error such as doctor negligence or incompetence when determining which types of cancer testing may be needed. Cancer misdiagnosis may begin during the testing process, such as errors in performing diagnostic imaging or improper procedure when collecting cell samples for a biopsy.

Our guest today is Sarah E. McDonald, a two-time cancer survivor and one-time mother of daughter, Rory. She has spent the majority of her 30-year career in the technology industry, 14 years of which were at eBay, including the period while she was battling cancer.

Sarah received her MBA from Cornell University and her BA from Occidental College. Beyond cancer, Sarah is interested in all things people-related – especially when paired with food, wine, the outdoors, and/or music. Sarah lives in Mill Valley with her husband, Geoff, and daughter, Rory.

The Cancer Channel is her first book.

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This week we will discuss Dysautonomia once again.

Our guest this week is Ella Eastin, a first-year medical student at Stanford University School of Medicine. She completed her undergraduate education at Stanford and was a member and captain of the Varsity Swim team, where she earned 12 National Championship titles and set 4 American Records. Following her graduation in 2019 with a B.S. in Human Biology, she competed professionally as a member of Team USA. However, her Olympic aspirations were cut short due to a COVID-19 infection which led to her developing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Dysautonomia, resulting in her retirement from competitive swimming. To raise awareness for individuals affected by chronic illness and disability, she founded Dysunderstood, a community platform for patients to share their experiences. As a future healthcare provider, her goal is to bring attention to these debilitating conditions and provide unwavering care for patients facing lifelong health challenges.

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This week we will discuss a debilitating neurological disorders of COVID-19 syndrome in survivors, the scope of SARS-CoV-2-induced dysautonomia (DNS) is yet to be understood, though the implications are enormous. Our guest today ended up with POTs (a form of dysautonomia) after receiving the first dose of the Pfizer vaccine. Chelsea, a 21 yr old former nursing student was diagnosed after having so many symptoms she couldn't complete her studies. Studies are just now surfacing that give credence to her claims it was the vaccine that made her ill.

Since the vaccine is very safe for the majority of individuals we would NEVER SUGGEST TO OPT OUT of the vaccine. But knowledge is power, and researchers will find out more about this possible link thanks to stories like hers getting into the mainstream media.

Postural Orthostatic Tachycardia Syndrome or POTs is a debilitating condition affecting the autonomic nervous system.

With neurocognitive impairments or “brain fog”; problems with body temperature regulation; gastroenterological symptoms like nausea, abdominal pain, diarrhea, or constipation; and dark red-blue discoloration of the legs being the most common symptoms. Some people with POTS also may have one or more associated conditions, including migraine, irritable bowel syndrome, and joint hypermobility syndrome. Some people with POTs can have pre-syncope or syncope episodes where they feel like they might pass out or actually do pass out. It's a serious condition that needs proper testing and follow up with a physician.

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On today’s show, we are speaking with Dr. Deepti Agarwal. Dr. Agarwal graduated from the University of Pennsylvania, then earned her MD from Stony Brook School of Medicine at the State University of New York (SUNY). She completed her residency in Anesthesiology at Northwestern Memorial Hospital Feinberg School of Medicine. Her Fellowship in Pain Management is from Weill Cornell Medical College/New York Presbyterian Hospital. She also completed an Integrative Medicine Fellowship at Northwestern/UCSF Osher Center for Integrative Medicine.

Our topic for today is a BOGO! Yep, not one but two episodes in one! Longevity Medicine & Regenerative Medicine. Longevity medicine is advanced personalized preventive medicine powered by deep biomarkers of aging and longevity and is a fast-emerging field. The field encompasses the likewise rapidly evolving areas of biogerontology, geroscience, and precision, preventive, and functional medicine. (Longevity medicine: upskilling the physicians of tomorrow - The Lancet Healthy Longevity )

And What Is Regenerative Medicine? (webmd.com) Regenerative medicine, a fairly new field in which experts are looking for therapies and strategies similar to the mechanisms that help your body heal itself, is changing that.

You can learn more by listening now or head over to our website for more links. Https://www.PodcastDX.com.

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This week we are talking once again with Kristal Kent. If you recall, Kristal has joined us on previous interviews discussing Fibromyalgia and again discussing prepping for surgery as a chronically ill person. We never really gave Kristal the credit she deserves for being such a fantastic advocate for all Veterans and those with Fibro or other life-long medical conditions. Allow me to properly introduce this dynamic woman!

Kristal Kent is a disabled Army Veteran living with Fibromyalgia and served with the 256th Combat Support Hospital (256th CSH). Kristal worked with the Personnel (HR) department, then after September 11th, 2001, Kristal was re-assigned to the Tactical Operations Center (TOC) of the 256th CSH. After being medically discharged due to injuries, Kristal stayed on with her unit, the 256th CSH, and volunteered for 2 ½ years as the Family Readiness Group Leader, re-invigorating the program to become a supportive extension of the unit for the soldiers and their families. During her time as the FRG Leader, Kristal upstarted a Food Pantry to assist the Unit’s service members struggling with food sustenance, coordinated a resource list of federal, state, and local support and assistance resource programs for soldiers and families, along with hosted “Readiness” educational weekend to ensure soldiers and Military Families were prepared for deployment. Kristal’s Volunteerism as FRG Leader was officially recognized with a Commendation from the U.S. Department of the Army. Kristal also worked in Social Services for over 20 years in a variety of roles, from Adult Advocacy Coordinator, Care Coordinator, Assertive Community Treatment Specialist, Benefits Coordinator and Supported Employment Services, assisting individuals with Intellectual Disabilities, Mental Health Conditions and Veterans alike.

As a Veteran living with Fibromyalgia, Kristal identified the lack of supports, healthcare options and education for those living with Fibromyalgia, especially Veterans. To address the gap in healthcare and community supports, Kristal founded the initiatives, “The Fibromyalgia Pain Chronicles” and “Veteran Voices For Fibromyalgia,” to address the inequities in healthcare, Kristal engages in VA Policy Advocacy, Legislative Advocacy and Systems Advocacy to emote positive change for those living with Fibromyalgia. Kristal also provides support, educational resources, and advocates on behalf of those living with various Chronic Pain Conditions, Rare Diseases, PTSD and Traumatic Brain Injury (TBI).

Kristal’s Advocacy work on behalf of the Veteran and Fibromyalgia Communities has been recognized by several organizations such as WEGO Health in which she received the Patient Leader Hero Award and the Best In Show on Facebook in 2018, the 2019 Fibro Warrior Award from the Fibromyalgia Care Society of America, the Warrior of the Week in 2020 from UK Fibromyalgia. In May 2021 Kristal was presented with a Commendation from the State of Ohio House of Representatives for her advocacy work through Veteran Voices For Fibromyalgia. In August 2022, Kristal was chosen by Health Union, through the Social Health Awards patient advocacy platform, as the recipient of the 2022 Lifetime Achievement Award. In addition, in May 2022 Kristal advocated for and obtained a Proclamation designating May 12th as Fibromyalgia Awareness Day from the State of Ohio Governor.

Kristal previously served 3 years as a Board of Trustee for the Fibromyalgia Care Society of America along with previously served as a Board Member on the Wego Health Patient Advisory Board. Kristal is currently a member of Society For Participatory Medicine, Social Health’s Patient Leader Network, a Co-Op member of Savvy Cooperative and a member of the American Legion.

Kristal's latest medical challenge has been heart related. Since February is heart health month and Valentines Day happens to be on a Tuesday this year (we post our episodes on Tuesdays) what better of a guest for this week?

SOCIAL MEDIA:

FACEBOOK:

The Fibromyalgia Pain Chronicles:

https://www.facebook.com/FibroPainChronicles

Veteran Voices For Fibromyalgia:

https://www.facebook.com/VeteranVoices4Fibro

INSTAGRAM:

Kristal @ The Fibromyalgia Pain Chronicles:

http://www.instagram.com/thefibropainchronicles

YOUTUBE:

The Fibromyalgia Pain Chronicles:

https://www.youtube.com/feed/my_videos

Veteran Voices For Fibromyalgia: https://www.youtube.com/feed/my_videos

WEGO HEALTH:

https://app.wegohealth.com/Kristal

11 Tips For Keeping Your Heart Healthy As A Woman Heart disease is the leading cause of death for women in the United States, accounting for one in four deaths each year. Cardiac events, such as heart attacks and strokes, are also more common in women than men.

While there are many factors that contribute to heart disease, there are also a number of things that women can do to protect themselves. These include maintaining a healthy weight, quitting smoking, exercise, and knowing the signs and symptoms of a heart attack.

Here are eleven tips for keeping your heart healthy as a woman. These tips are based on the latest scientific evidence and are designed to help you lower your risk of heart disease and live a healthier life.

Heart Disease is the Leading Cause of Death for Women in the United States: The Centers for Disease Control and Prevention (CDC) reports that heart disease is the leading cause of death for both men and women in the United States. The American Heart Association (AHA) says that about 1 in every 4 female deaths is attributed to heart disease. A variety of lifestyle choices and risk factors can contribute to the development of heart disease. It is important to be aware of them and take steps to reduce your risk.
Women Often Experience Different Symptoms of Heart Disease Than Men: Though men and women both experience cardiovascular events, it has been found that women can experience different symptoms than men. Women may experience shortness of breath, fatigue, or pain in the upper back and neck, aside from chest pain. Women may also have a higher risk of developing atypical heart attack symptoms than men. If something doesn’t seem quite right, it is important to seek medical attention right away.
There are Certain Lifestyle Choices That Can Help Keep Your Heart Healthy: Making certain lifestyle changes can help reduce your risk of heart disease. For example, it is important to maintain a healthy weight and exercise regularly. Additionally, it is important to pay attention to your food choices and quit smoking. All of these measures can help reduce the risk for cardiovascular events.
Pay Attention to Your Family History: It is important to pay attention to your family history, as your risk for heart disease can be higher if there is a family history of heart disease. It is important to speak with your doctor about your family history and determine if you need to be tested for any genetic heart diseases.
Manage Your Mental Health: Mental health can also be an important factor when it comes to heart health. Studies have found that stress, depression, and anxiety can all increase the risk of cardiovascular events. Taking steps to manage your mental health, such as talking to a therapist or engaging in mindfulness practices, can help reduce this risk.
Be Physically Active: Regular physical activity is one of the most important things you can do for your heart health. It can help reduce your risk of cardiovascular events, such as heart attacks and strokes. Aim to be physically active for 30 minutes five days a week. Activities such as walking, biking, and running are all good options.
Eat a Healthy Diet: Eating a healthy diet is an important part of maintaining a healthy heart. The AHA recommends following an eating plan that is high in fiber and low in saturated and trans fat. This includes eating more fruits and vegetables, whole grains, lean proteins, and healthy fats.
Don't Smoke: Smoking can damage the cells in the coronary arteries, which can increase the risk of heart disease. If you smoke, it is important to quit. It can take time and there are a variety of resources available to help.
Get Your Cholesterol and Blood Pressure Checked Regularly: High cholesterol and high blood pressure can both make it more difficult for your heart to work properly, so it is important to get them checked regularly. Your doctor can help you decide how often these tests should be done.
Keep Diabetes Under Control: Diabetes can also increase the risk of heart disease. Keeping your diabetes under control can help keep your heart healthy. This means managing your blood sugar levels, eating a healthy diet, and exercising regularly.
Make Sure You’re Getting Enough Sleep: Inadequate sleep can increase the risk of heart disease. Aim to get seven to eight hours of sleep each night and speak to your doctor if you are having trouble sleeping.

Advantage of Women's Health Screenings: Annual wellness physicals or women's health screenings can help detect certain medical issues early on, which can be beneficial for heart health. These screenings may include electrocardiograms (ECG) or other tests to check your heart health.

Conclusion: Following the tips outlined above can help reduce your risk of heart disease and help keep your heart healthy as a woman. It is important to remember that each person is unique and it is important to speak with your doctor to understand what is best for your individual needs.

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This week we will discuss Witkop Syndrome with Cheryl Kingsford. Cheryl is 44.5 years old, from Boise, Idaho, advocate, survivor of trauma, living with ectodermal dysplasia. Single, no kids of her own, but has cute chihuahua. She rescued Gina August 5, 2020 after fostering her since May 28, 2020. Gina and Cheryl go on a lot of hiking adventures. Cheryl has a Bachelor of Science in Psychology (Magna Cum Laude) from Boise State University 2010. First in her family. Does a lot of volunteer work over the years. Cheryl is the National Foundation for Ectodermal Dysplasia Family Driven Lead Advocate for Idaho. She is joining us today to talk about Ectodermal Dysplasia, Witkop’s Syndrome, and for the "Ensuring Lasting Smiles Act"

Witkop is a rare syndrome that can affect the nails teeth and hair. Witkop syndrome is a rare autosomal dominant ectodermal dysplasia involving the teeth and nails. Although a few reported cases have sparse or fine hair, almost all affected individuals have normal hair, sweat glands, and ability to tolerate heat. Affected individuals have a variable number and variable types of congenitally missing permanent and/or primary teeth, which frequently results in lip eversion due to loss of occlusion in the vertical dimension. Nails are generally thin, slow-growing, brittle, and spoon-shaped (koilonychia). Toenails are usually more severely affected than fingernails. The nail defects are alleviated with age and may not be easily detectable during adulthood (summary by Jumlongras et al., 2001).

This month is Ectodermal Awareness month. Ectodermal dysplasias are rare genetic disorders that affect about 3 out of 10,000 babies. They cause the parts of the body like hair, teeth, nails, sweat glands and skin to develop and function abnormally. With more than 100+ different types of ectodermal dysplasias, it’s challenging for families to find answers and for healthcare professionals to offer treatments or cures. Witkop Syndrome is one of these disorders and we are honored to be sharing Cheryl's story today.

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This week we will discuss Strep once again.

GBS bacteria can cause many types of infections:

Bacteremia (bloodstream infection) and sepsis (the body’s extreme response to an infection)
Bone and joint infections
Meningitis (infection of the tissue covering the brain and spinal cord)
Pneumonia (lung infection)
Skin and soft-tissue infections

GBS most commonly causes bacteremia, sepsis, pneumonia, and meningitis in newborns. It is very uncommon for GBS to cause meningitis in adults. (CDC)

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This week we will discuss Strep once again.

GBS bacteria can cause many types of infections:

Bacteremia (bloodstream infection) and sepsis (the body’s extreme response to an infection)
Bone and joint infections
Meningitis (infection of the tissue covering the brain and spinal cord)
Pneumonia (lung infection)
Skin and soft-tissue infections

GBS most commonly causes bacteremia, sepsis, pneumonia, and meningitis in newborns. It is very uncommon for GBS to cause meningitis in adults. (CDC)

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This week we will discuss the dangers of eating restaurant ice or any ice for that matter! Ice handling is part of food safety training. Without proper ice machine cleaning, your restaurant’s ice maker is at risk from mold, slime, scale, and sediment.

Slime and mold form because ice machines provide a damp and dark environment where they can thrive. Yeast and dust in the air provide these growths with an unlimited supply of food to continue to flourish.

Ice machines are also susceptible to other biological contaminants that are dangerous to customers, like E. Coli, Hepatitis A, and Norwalk Virus. In fact, a 2011 study from the Environmental Protection Agency focused on Las Vegas restaurants found that 72.2 percent of ice was “positive for presumptive coliform bacteria presence.”

Restaurants can clean mold, slime, and other biological contaminants from their ice machine with a few simple steps. A weekly cleaning schedule helps tremendously to keep these containments at bay, but it is not a replacement for a professional ice machine cleaning from a qualified technician. (credits)

Another way eating ice can be harmful is when a person develops Pica, or an unusual craving for chewing on ice. This can mean you have iron deficiency anemia.

Compulsive ice chewing can lead to a variety of complications. It may also interfere with your life at school, work, or home. Make an appointment with your healthcare provider to find out the reason why you’re craving ice. A simple blood test may help you figure out the cause of your cravings and start treatment. (credits)

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This week we will discuss olfactory disorders, or problems with smelling either good or bad chemicals, foods, fragrances, and the like. Did you know your sense of smell also affects your taste? A damaged sense of olfaction is severely disrupting: the joy of eating and drinking may be lost, and depression may result. There could also be dangers associated with the loss of smell, including the inability to detect leaking gas or spoiled food. More than 2.7 million people in the United States have an olfactory disorder, and this is likely an underestimate. Some people have suggested that about half of people over the age of 60 have a decreased sense of smell.

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This week we will discuss both Meningioma & Hemiplegia.

Our guest today is Marjorie Turner Hollman, a freelance writer/ editor who loves the outdoors, uses hiking poles to help keep her balance on the trail, and has completed four books in the Easy Walks guide book series. Her latest book, My Liturgy of Easy Walks, is a memoir, meditations on learning to live with a changed life. A native Floridian, she came north for college and snow! She has appeared on Boston’s ABC news show, Chronicle; Boston’s CBS Channel 4; the Boston Globe; local radio and cable TV shows; and been published in local, regional, and national publications.

A meningioma is just one of the more than 120 types of tumors that can occur in the brain. Meningiomas occur when cells from the membrane covering the brain and spinal cord (called the meninges) grow and multiply out of control. These primary tumors are different from metastatic brain tumors, in which cancerous cells travel from other sites, such as the breast or lung, to the brain.

Meningiomas usually occur in people aged 40 to 70 and are more common in women than men. About 3% of people over age 60 develop meningioma.

Meningiomas fall into three general types: benign, atypical and malignant. About 85-90% of meningiomas are truly benign, although they may grow inside the head and cause problems by pressing on the brain. Atypical meningiomas are more difficult to eliminate by surgery alone and may recur locally after treatment. Malignant meningiomas, while uncommon, behave like a cancer and can spread directly into the brain, causing serious neurologic symptoms. (credits: Rosewell Park Cancer Center)

Unfortunately for Marjorie, the surgery to remove the life-threatening mass growing in her brain caused paralysis to her right side. She knew before going into surgery she might not survive the 12 hour operation. What she didn't know, was there was the risk of paralysis. Her story is one of strength and determination as she took her new condition to task and started helping others with mobility difficulties have a better understanding of accessible hiking trails on the East Coast.

Marjorie Turner Hollman

Finding Easy Walks Wherever You Are

Freelance Writer/Author/Editor

www.marjorieturner.com

marjorie@marjorieturner.com

https://www.amazon.com/author/marjorieturnerhollman

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This week we will discuss another respiratory virus that has been really hitting hard here in the United States this season.

Respiratory syncytial virus (RSV) is a contagious virus that is usually mild, but can severely affect the lungs and respiratory airways in older adults While you may not have heard of it yet, RSV is not a new virus and may be more of a health concern than you think—even if you're healthy. And if you're aged 60 or older, you can get RSV.

But don’t worry, by coming here you’ve taken a savvy first step toward learning about RSV so you can be informed. Let’s dive in.

What are the symptoms of RSV? Symptoms of RSV can range from mild to severe and can last up to 2 weeks. RSV can cause severe symptoms in older adults.

RSV symptoms may include:

Fever
Cough
Sore Throat
Runny Nose
Congestion
Headache
Tiredness

The US Centers for Disease Control and Prevention states that adults at highest risk for severe RSV infection include older adults, especially those 65 years of age and older, adults with chronic heart or lung disease, and adults with weakened immune systems.

How does RSV spread? Similar to some other respiratory infections, a cough or sneeze can easily spread RSV. And while you're typically contagious for 3-8 days, some people, especially those with weakened immune systems, can be contagious for as long as 4 weeks—even after they stop showing symptoms.

There’s a trio of viruses spreading in the U.S. — COVID-19, the flu and RSV — and some in the medical world are calling it a “tripledemic.”

Public health officials have seen “elevated” levels of all three viruses circulating in the U.S. If you’re feeling sick, it can be tough to differentiate among COVID-19, the flu and RSV because they share similar symptoms and can also look like the common cold.

When it comes to COVID-19, the CDC reports cases and deaths have risen in the past few weeks, as of Dec. 16. Meanwhile, Walenksy said at the briefing that flu and RSV cases are higher than what’s been historically typical this season.

It’s possible that you might be sick with one of the viruses. But keep in mind that from late August through March, it’s also a prime time to get a cold

Am I sick with COVID, RSV, the flu or simply a cold? Before getting into symptoms, one characteristic COVID-19, the flu and RSV shares is that they’re respiratory infections affecting the airways, lungs, sinuses and throat. The cold is similar in that it is an upper respiratory infection affecting the nose and throat.

COVID-19 and the flu have quite a few overlapping symptoms, according to the CDC, including:

Fever
Cough
Trouble breathing
Feeling tired
Sore throat
Headache
Vomiting
Runny or a stuffy nose

Diarrhea is listed as a flu and COVID-19 symptom by the CDC. However, while anyone with COVID-19 can experience diarrhea, it is more likely that children with the flu will experience the symptom, according to the agency.

The CDC notes that COVID-19 symptoms may take longer to show up after an initial infection compared with the flu.

Overall, the flu is the most likely to result in muscle aches and a fever compared to COVID-19, a cold and RSV, according to NYU Langone Health.

In the U.S., the flu and RSV is hitting children hard and overwhelming hospitals, NPR reports.

RSV, or respiratory syncytial virus, can affect anyone with “cold-like” symptoms and has the potential to be most severe for babies and older adults, according to the CDC.

The most common symptoms of RSV and a cold Similarly to COVID-19 and the flu, RSV symptoms, according to the American Academy of Pediatrics, include:

• Fever

• Cough

• Trouble breathing, including wheezing and shortness of breath

• Feeling tired

• Stuffy nose

Other symptoms include sneezing, flaring nostrils, lack of appetite, and “head bobbing or chest caving in between and under ribs with each breath,” the American Academy of Pediatrics reports.

The common cold also shares overlapping symptoms of COVID-19, the flu and RSV, according to Mayo Clinic.

Some include:

• Low-grade fever

• Cough

• Runny or stuffy nose

• Congestion

Meanwhile, sneezing, body aches and a mild headache are also cold symptoms. Getting evaluated for COVID-19 or the flu

With COVID-19 and the flu, the CDC reports that “you cannot tell the difference between” the pair based on symptoms.

Luckily, there is a test that can detect whether you have COVID-19, the flu and even RSV that you can get through a health care provider.

If all three are ruled out, there’s potential that you could have a cold.

Generally, good habits to prevent yourself from getting sick include washing hands, avoiding touching your face, avoiding close physical contact, staying home and cleaning surfaces

(CREDITS: https://bit.ly/3jIWxbG)

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With the winter weather now fully upon us we thought it was a good time to remind everyone about winter safety.

Hypothermia is a medical emergency that occurs when your body loses heat faster than it can produce heat, causing a dangerously low body temperature. Normal body temperature is around 98.6 F (37 C). Hypothermia (hi-poe-THUR-me-uh) occurs as your body temperature falls below 95 F (35 C).

When your body temperature drops, your heart, nervous system and other organs can't work normally. Left untreated, hypothermia can lead to complete failure of your heart and respiratory system and eventually to death.

Hypothermia is often caused by exposure to cold weather or immersion in cold water. Primary treatments for hypothermia are methods to warm the body back to a normal temperature.

And being the animal lovers that we are we also talk about their safety in the winter. Our main concern is always for the health and safety of our guests, our listeners and any service animals.

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This week we will discuss how you can stay healthy during the upcoming holiday season. With COVID 19 ramping up once again along with the Flu and RSV you have enough to worry about when it comes to staying safe and healthy as you travel or gather with family or friends. Food safety shouldn't take a back seat! No one needs food poisoning to the list of risks this winter! We all wish you a very happy safe and healthy holiday.

Food poisoning, also called foodborne illness, is illness caused by eating contaminated food. Infectious organisms — including bacteria, viruses and parasites — or their toxins are the most common causes of food poisoning.

Infectious organisms or their toxins can contaminate food at any point of processing or production. Contamination can also occur at home if food is incorrectly handled or cooked.

Food poisoning symptoms, which can start within hours of eating contaminated food, often include nausea, vomiting or diarrhea. Most often, food poisoning is mild and resolves without treatment. But some people need to go to the hospital.

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On today's show we discuss The Chicago House, founded in 1985 during the height of the AIDS crisis, Chicago House initially served as a housing resource for those living with HIV/AIDS. Over the past three decades, they evolved, remaining steadfast in their roots to provide housing for anyone impacted or vulnerable to HIV/AIDS while expanding their services to empower individuals in the greater LGBTQ+ community.

Chicago House empowers persons living with or vulnerable to HIV/AIDS to lead healthy and dignified lives through housing and compassionate, client-centered support services. Chicago House is committed to preventing new HIV transmissions and ensuring individuals that are faced with a diagnosis are linked to care. As part of the local and global Getting to Zero effort they provide essential health services to individuals vulnerable to HIV with a goal to eliminate the HIV epidemic by the year 2030.

Our guest is MICHAEL T. HERMAN (HE/HIM/HIS) Chief Executive Officer of The Chicago House. He is what you call a born and bred Chicagoan. He grew up on the Southwest side of the city in an Irish, German, Lithuanian, and Catholic family. The three biggest values in his home growing up were family, faith, and education. He lived directly across the street from the church where he went to elementary school. At a young age, he entered the seminary attending Quigley South Seminary located at 79th and Western. He attended college seminary at Loyola University where he received a degree in Computer Programming and a minor in philosophy.

He went on in the seminary to get a masters of Divinity before being ordained a catholic priest in 1989. For 17 years, he served as a priest in the Hispanic communities of Chicago. He loved the priesthood but eventually left active ministry to live as an out gay man. After leaving the priesthood, he joined Chicago House as the CDO, Chief Development Officer. In many ways, Chicago House allowed him to continue his ministry by working with the LGBTQ communities and those most vulnerable to HIV/AIDS. After his time as CDO at Chicago House, he secured a role as VP of Philanthropy at Kohl Children’s Museum. He valued his 6 years at the museum and is now thrilled to have began his work as Chief Executive Officer at Chicago House in July 2019. He met his husband, Bernard, 23 years ago playing volleyball. During those years, they have gotten married three times with the third one finally recognized as a legal marriage. They adopted their son from the Philippines. Although much has changed in this world during his life, the values of family, faith, and education remain constant for him.

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Our guest today is Chelsea Weaver, a 31-year-old living in Tennessee. She has a beautiful little girl that is just over 2 years old, a wonderful husband, and they all live on a quiet farm property. Before coming down with COVID, she was a surgical technologist. She used to assist in open heart surgery as well as some other specialties but hasn't been able to function in her career for about two years now. Unfortunately, her COVID symptoms have morphed into Long COVID (specifically POTs or Postural Orthostatic Tachycardia Syndrome.)

While the global spread of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infections has slowed, many people suffer long-lasting symptoms, a condition known as post-acute sequelae of COVID 2019 (COVID-19) (PASC), or long COVID. Even though PASC is not widely described, it is most commonly defined as COVID-19 symptoms that continue longer than 30 days.

PASC can manifest as a wide range of symptoms, many exhibiting autonomic characteristics. An autonomic nervous system illness, postural orthostatic tachycardia syndrome (POTS), strongly connected with a prior viral infection, is the most prevalent autonomic diagnosis correlated with PASC.

The most prevalent symptoms were brain fog, exhaustion, shortness of breath with exercise, headache, palpitations, body pains, tachycardia, and lightheadedness, consistent with previous research that found many of the same symptoms in individuals with PASC.

A COMPASS-31 score of above 20 was found in 67% of PASC patients, indicating autonomic dysfunction with moderate to severe. The COMPASS-31 consists of 31 questions that fall into 6 domains of dysautonomia: orthostatic intolerance (4 items), vasomotor dysfunction (3 items), secretomotor dysfunction (4 items), GI dysfunction (12 items; includes gastroparesis, constipation, and diarrhea), urinary dysfunction (3 items), and pupillomotor dysfunction (5 items). An answer was scored as zero when it was not assigned a point. A raw domain score was obtained by adding together points within each domain. The total score within each domain was weighted as previously described15 and then added together to give a total score ranging from 0 to 100. The maximum weighted scores for each subdomain are as follows: 40 for orthostatic intolerance, 5 for vasomotor dysfunction, 15 for secretomotor dysfunction, 25 for GI dysfunction, 10 for urinary dysfunction, and 5 for pupillomotor dysfunction.

CONCLUSIONS: "Our study finds that 67% of individuals with Long COVID are developing dysautonomia. That’s an estimated 38 million Americans with Long COVID dysautonomia, and millions more around the world,” says Lauren Stiles, President of Dysautonomia International and Research Assistant Professor of Neurology at Stony Brook University. (CREDITS: https://bit.ly/3VzS7BQ & https://bit.ly/3VPnU1u )

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This week we will discuss how food and exercise affect Fibromyalgia with Dr. Michael Lenz. Dr. Lenz is the host of the podcast, Conquering Your Fibromyalgia, where he blends the best of lifestyle medicine and medical management of fibromyalgia and related problems In years past, depression was often ignored as a “real” problem until finally the medical community acknowledged that this mood disorder is a valid problem affecting million and needs to be treated. Now it is time for physicians to step up and realize fibromyalgia is a similarly debilitating medical problem that strongly merits diagnosis and treatment. Conquering Your Fibromyalgia is an important contribution to bringing both doctors and patients up to speed on this profoundly serious problem today, offering them helpful solutions to their perplexing problem. Dr. Lenz has 26 years of experience as a pediatrician, internist, and lifestyle medicine physician.

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This week we had the honor to speak with Christian John Lillis. Christian is executive director of the Peggy Lillis Foundation for C. diff Education & Advocacy (PLF), co-founded with his brother, Liam, following the death of their mother from a Clostridioides difficile (C. diff) infection in April 2010. PLF envisions a world where C. diff is rare, treatable, and survivable. In pursuit of its vision, PLF is building a nationwide C. diff awareness movement to educate the public, empower advocates, and shape policy.

C. difficile or C-Diff is short for the name of the germ that causes the infection: Clostridioides difficile. C. difficile can affect anyone. The risks are greater for people who:

Are taking, or have recently taken, antibiotics
Have spent some time in a hospital or in a long-term care facility, such as a nursing home
Have a weakened immune system
Are 65 years of age or older

When C. difficile germs take hold and multiply in the gut (intestines),

they can wreak havoc. This center of gut health is called the microbiome. When it gets out of balance your health is at risk, and infections like C. difficile can result. The most common symptoms—watery diarrhea, nausea, stomach pain or cramps—can last for days. If not treated right away, C. difficile can lead to serious medical problems for the person who has it. A severe C. difficile infection can be fatal for certain people.

Many people may not realize that getting a relapse of the infection is highly possible. This is called recurrent C. difficile. Did you know? C. difficile is very contagious and can become a serious health threat to others in the home and the community.

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On today's show we are speaking with Kathleen J. O'Shea, Professor of English at Monroe Community College, (Rochester, N.Y.)

Kathy is a 43-year migraine sufferer, who has taken her passion for literature and her chronic illness to create "So Much More Than A Headache, Understanding Migraine Through Literature"

As we know, migraine is so much more than 'just a headache' but possibly a refresher would help us understand and in understanding, create a level of empathy for those around us living with this chronic disease.

Medications can help prevent some migraines and make them less painful. The right medicines, combined with self-help remedies and lifestyle changes, might help. (Credits: Mayo Clinic)

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Dan Dry Dock Shockley, retired U.S. Navy veteran; Operation Desert Storm; Enduring and Iraqi Freedom veteran and 9 hereditary colon cancer WARRIOR.

The U.S. based Colon Cancer Alliance featured his journey for their Veterans Day blog. The below url provided for your reading pleasure:

https://www.ccalliance.org/blog/prevention/dan-drydock-shockley-colon-cancer-warrior-forges-on

Also, in honor of Rare Cancer Day, 30 September, the NORDpod featured him as a special guest.

The below url provided for your listening pleasure:

https://open.spotify.com/episode/6cJJwWXEp34wD8ulFBXNQu?si=m6_V8YwJRwqEAWxXzTp3Cw&utm_source=native-share-menu&dl_branch=1

Additionally, he has been a regular contributor to the UK based Rare Revolution team. They recently invited me to be part of their National Patient Advocate Day campaign. My input can be viewed on Instagram:

https://www.instagram.com/tv/CSwmNDwjuLQ/?utm_medium=copy_link

In closing, here's his latest article which was featured by the Montreal based, RareDIG Organization.

https://www.raredigmcgill.com/HORD/Season-Four

Other links for this episode:

https://www.endeavors.org/veterans-support-mental-health-care-news/what-is-a-veterans-wellness-center-how-endeavors-is-changing-the-face-of-veteran-wellness/
https://www.va.gov/health-care/
https://acp-advisornet.org/articles/1172/4-tips-staying-healthy-veteran

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This week we will discuss Lambert Eaton Syndrome with Latasha Densie DeRamus. Tasha is 42yrs old, living in Tampa, Fl. with her a daughter Naomi, and a fur baby name Foxy who is 7. Besides Lambert-Eaton, Tasha also deals with Gastroparesis, non-intractable vomiting with nausea, is underweight due to inadequate caloric intake and acute bronchitis.

Lambert-Eaton syndrome, also known as Lambert-Eaton myasthenic syndrome, is a condition in which the immune system attacks the neuromuscular junctions — the areas where your nerves and muscles connect. Normally, your nerve cells pass signals along to your muscle cells. These signals help your muscles move. Because Lambert-Eaton syndrome affects the way your nerves and muscles communicate, making it difficult to move your muscles as you normally would. (credits Johns Hopkins https://bit.ly/3TONh2J)

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This week we will be discussing Autoimmune Hepatitis with our guest Michelle Irving.

A pioneer in the Chronic Illness space, Michelle Irving is the Queen of the Underworld. She mentors women around the world, teaching them how to create a life filled with love, meaningful work and deep personal power. She believes we can all have a positive relationship with ourselves even in the midst of experiencing illness. Not to be deterred by a chronic illness, Michelle started her own podcast titled "Pyjama Interviews" as well as providing a six month online course for people living with disabilities or chronic illness. You can find out more from her website: "Queen of the Underworld"

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This week we will discuss the annual medical checkup or annual physical exam. We will not have a guest on this episode but hope you will learn just as much from the discussion based on the research we have done for this episode.

Annual Physical Exam: The Basics The physical exam is an essential part of any doctor's visit. Surprisingly, though, there are no absolutes in a routine physical. A good doctor may be thorough or brief, but they will spend time listening to your concerns and providing counseling for your particular complaints and risk factors.

Annual exams usually check your:

History. This is your chance to mention any complaints or concerns about your health. Your doctor will also likely quiz you about lifestyle behaviors like smoking, excessive alcohol use, sexual health, diet, and exercise. The doctor will also check on your vaccination status and update your personal and family medical history.

Vital Signs. These are some vital signs checked by your doctor:

Blood pressure: Less than 120 over less than 80 is a normal blood pressure. Doctors define high blood pressure (hypertension) as 130 over 80 or higher.
Heart rate: Values between 60 and 100 are considered normal. Many healthy people have heart rates slower than 60, however.
Respiration rate: From 12 to 16 breaths per minute is normal for a healthy adult. Breathing more than 20 times per minute can suggest heart or lung problems.
Temperature: 98.6 degrees Fahrenheit is the average, but healthy people can have resting temperatures slightly higher or lower.

General Appearance. Your doctor gathers a large amount of information about you and your health just by watching and talking to you. How is your memory and mental quickness? Does your skin appear healthy? Can you easily stand and walk?

Heart Exam. Listening to your heart with a stethoscope, a doctor might detect an irregular heartbeat, a heart murmur, or other clues to heart disease.

Lung Exam. Using a stethoscope, a doctor listens for crackles, wheezes, or decreased breath sounds. These and other sounds are clues to the presence of heart or lung disease.

Head and Neck Exam. Opening up and saying "ah" shows off your throat and tonsils. The quality of your teeth and gums also provides information about your overall health. Ears, nose, sinuses, eyes, lymph nodes, thyroid, and carotid arteries may also be examined.

Abdominal Exam. Your doctor can use a range of examination techniques including tapping your abdomen to detect liver size and presence of abdominal fluid, listening for bowel sounds with a stethoscope, and palpating for tenderness.

Neurological Exam. Nerves, muscle strength, reflexes, balance, and mental state may be assessed.

Dermatological Exam. Skin and nail findings could indicate a dermatological problem or disease somewhere else in the body.

Extremities Exam. Your doctor will look for physical and sensory changes. Pulses can be checked in your arms and legs. Examining joints can assess for abnormalities.

Male Physical Exam An annual physical exam for men might also include:

Testicular exam: A doctor can check each testicle for lumps, tenderness, or changes in size. Most men with testicular cancer notice a growth before seeing a doctor.
Hernia exam: The famous "turn your head and cough" checks for a weakness in the abdominal wall between the intestines and scrotum.
Penis exam: A doctor might notice evidence of sexually transmitted infections such as warts or ulcers on the penis.
Prostate exam: Inserting a finger in the rectum lets a doctor feel the prostate for its size and any suspicious areas.

Female Physical Exam A woman's annual exam might include:

Breast exam. Feeling for abnormal lumps may detect breast cancer or benign breast conditions. The doctor will also check the lymph nodes in the underarm area and look for visual abnormalities of the breasts and nipples.
Pelvic exam: The pelvic exam allows examination of the vulva, vagina, cervix, uterus and ovaries. Routine checks for sexually transmitted infections are often done. A Pap test and HPV test can screen for cervical cancer and help assess risk.

(Credits: WEBMD.com)

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This week we will discuss Functional Medicine as it relates to Cardiology. Our guest today is Dr. Trent Orfanos.

Dr. Trent Orfanos is the Director of Integrative and Functional Cardiology at Case Integrative Health. Dr. Orfanos brings decades of experience in both Cardiology and Integrative Medicine.

In his own words: "I practiced adult invasive, nuclear, noninvasive, and interventional cardiology from 1982 to 2019. From 2010 to 2019, I embraced preventative cardiology from a functional medicine perspective while maintaining my full-time interventional cardiology practice. I saw my patients flourish with these functional medicine interventions who were previously deteriorating with only conventional care. This was very gratifying for myself and my patients." At CIH, Dr. Orfanos will continue to practice his functional philosophy and expand his toolkit for serving patients.

Dr. Orfanos earned a Bachelor of Arts in Biological Sciences and his Doctorate of Medicine from Indiana University. His residency is in Internal Medicine at St. Vincent Hospital in Indianapolis before completing a Fellowship in Cardiology under Edward Steinmetz, MD. He has Board Certifications in Internal Medicine, Cardiology, Integrative Medicine, Functional Medicine, and Antiaging medicine (five if you're counting). He is a fellow of the American College of Cardiology as well as the American Academy of Anti-Aging Medicine.

During his time in hospitals, Dr. Orfanos was the Sub-section Chief of Cardiology at St. Anthony Medical Center, as well as a Regional Director on their Board. Dr. Orfanos is an Associate Clinical Professor of Medicine at the IU School of Medicine Northlake Campus.

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This week we are discussing Atrial fibrillation or A-fib. A-fib is an irregular and often very rapid heart rhythm (arrhythmia) that can lead to blood clots in the heart. A-fib increases the risk of stroke, heart failure and other heart-related complications.

During atrial fibrillation, the heart's upper chambers (the atria) beat chaotically and irregularly — out of sync with the lower chambers (the ventricles) of the heart. For many people, A-fib may have no symptoms. However, A-fib may cause a fast, pounding heartbeat (palpitations), shortness of breath or weakness. (Credits: https://mayocl.in/3USz4TH )

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This week we will discuss Long Covid or Post-Covid.

Post-COVID conditions are a wide range of new, returning, or ongoing health problems that people experience after being infected with the virus that causes COVID-19. Most people with COVID-19 get better within a few days to a few weeks after infection, so at least four weeks after infection is the start of when post-COVID conditions could first be identified. Anyone who was infected can experience post-COVID conditions. Most people with post-COVID conditions experienced symptoms days after first learning they had COVID-19, but some people who later experienced post-COVID conditions did not know when they got infected.

There is no test to diagnose post-COVID conditions, and people may have a wide variety of symptoms that could come from other health problems. This can make it difficult for healthcare providers to recognize post-COVID conditions. Your healthcare provider considers a diagnosis of post-COVID conditions based on your health history, including if you had a diagnosis of COVID-19 either by a positive test or by symptoms or exposure, as well as doing a health examination.

Researchers from the UK National Institute for Health Research who reviewed the available evidence said ongoing Covid symptoms examined reports from people of all ages and backgrounds.

They said that it cannot be assumed that people who are at lower risk of severe illness and death from Covid-19 are also at low risk of ongoing Covid.

Academics said that more work is needed to help those who are suffering as they said that many are "not believed" when they seek help.

Ongoing symptoms can include breathlessness, chronic fatigue, "brain fog", anxiety and stress, while others may have suffered permanent organ damage.

Some have reported "floating" symptoms whereby they suffer an illness linked to one part of the body - such as the respiratory system, the brain, cardiovascular system and heart, the kidneys, the gut, the liver or skin - which later abates only for new symptoms to arise in a different part of the body.

Such a wide range of symptoms, and different presentations of illness, mean that it is hard for doctors to diagnose, which means that it is equally difficult for patients to access the appropriate care, they added.

They also said that they did not like the term "long Covid" because it may mean that some patients who are struggling with ongoing after-effects are being missed.

Ongoing Covid may not be one illness but four different syndromes, they added.

These have been broadly categorized as: post intensive care syndrome, post viral fatigue syndrome, permanent organ damage and long term Covid syndrome. Some may suffer these simultaneously.

Academics stressed that the understanding of the effects are still at an early stage. (credits https://bit.ly/3UCYTa3)

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This week we have the honor of speaking with Katy Grainger about septic shock and DIC amputation

Four years ago, at the age of 52, Katy Grainger’s life was turned upside down when she nearly died from septic shock because of a small, infected cut on her thumb. Because of sepsis, she now lives as a double below-knee amputee who also lost the tips of most of her fingers. When she became ill, she was unaware of the symptoms of sepsis, so she now shares her story in order to prevent others from experiencing what she went through. One in five deaths worldwide are caused by sepsis, yet few people have heard of it and even fewer can identify the signs and symptoms.

Katy is on the Board of Directors of Sepsis Alliance, the leading advocate for sepsis in the United States, and volunteers with the Amputee Coalition supporting new amputees. She advocates for policy that supports issues impacting sepsis and people with limb loss. She was described in a recent magazine article as “one of the nation’s leading advocates for sepsis awareness”. Katy has turned the worst thing that has ever happened in her life into an opportunity to save lives and limbs. Hundreds of thousands of people have seen her speak or have read articles about her sepsis experience. She has impacted medical policy in the United States by speaking to law makers in Washington DC.

She has begun modeling and acting in order to represent disability in print and film. She has written many short stories about her experience and performed them as monologues throughout the pandemic in zoom shows. She is planning to publish a book about her experience and the opportunities that have arisen out of her tragedy.

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This week we have a brief insight to the fact that stress can play havoc on the immune system and we hope to have a new guest soon to discuss this weighty problem. If you are a member of the health care community and would like to be a guest on our show to discuss how stress affects the immune system, please drop us a line at PodcastDX@yahoo.com. Remember chronic stress = excessive cortisol and too much cortisol = a host of medical ailments.

Poor sleep

Cortisol levels are supposed to drop at nighttime, allowing your body to relax and recharge. But if your cortisol levels are too high, you might notice that, even if you’ve been tired all day, you get a second wind right around bedtime. Then you toss and turn all night – and feel tired again the next day.

Over time, high levels of cortisol deplete the adrenal glands and predispose you to chronic fatigue. So if you feel like your get up and go got up and went, you’re probably stressed.

You’re gaining weight, especially around your abdomen, even when you eat well and exercise.

Cortisol tends to make you thick around the middle, even when you’re doing everything “right.”

You catch colds and other infections easily.

Cortisol deactivates your body’s natural self-repair mechanisms, which means that your immune system which is perfectly designed by nature to keep you healthy goes caput, leaving you vulnerable to every cootie you encounter.

You crave unhealthy foods.

Cortisol raises your blood sugar, putting you at risk of diabetes. High glucose levels then bump up your insulin levels, which then drop your blood sugar it's a vicious cycle!

You experience backaches and headaches.

When your cortisol levels are high over a long period of time, your adrenal glands start to get depleted. This raises prolactin levels, increasing the body’s sensitivity to pain, such as backaches and muscle aches. Excessive cortisol also hypersensitizes the brain to pain, such that even the slightest twinge can excite the nerves of the brain, causing headaches.

Lo-Libido

Consider cortisol the anti-Viagra. When stress hormones are high, libido-inducing hormones like testosterone drop.

GI Issues.

Your gastrointestinal system is very sensitive to stress hormones like cortisol. You might experience nausea, heartburn, abdominal cramps, diarrhea, or constipation as a result of too many stress hormones. 9. Emotional Problems.

Cortisol and epinephrine can lead to jitters, nervous stomach, feelings of panic, even paranoia.

High levels of cortisol suppress production of serotonin, and next thing you know, you’re awash in doom and gloom.

Chronic High Cortisol=Adrenal Fatigue When your cortisol levels are bumped up, day after day, your adrenal glands, responsible for the production of cortisol, get worn out. Precursor hormones required for cortisol production get depleted. This could result in full blown adrenal collapse.

(Credits: Dr Lissa Rankin M.D. https://binged.it/3xgOpDc )

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I can't believe it's almost flu season already! We still aren't finished with COVID so we thought it would be a good reminder to get your flu shots!! In this episode we discuss the differences between the Flu and the common cold. The symptoms seem similar when it comes to the common cold and the flu. But there are subtle differences between the two. The experts share how flu differs from a cold. (And they all stress that flu can be prevented by getting the flu vaccine.)

1.While people with colds might feel hot, a fever of 102 degrees or higher often signals that a person has the flu.

2. Even though a cold makes people feel miserable, they normally improve without a doctor’s help. “Colds are usually self-healing,”

3. When people develop a cold, it normally starts slowly with mild sniffling, sore throat or congestion for a few days. Then it worsens. With flu, it occurs suddenly. People often feel great and then abruptly feel sick. “Flu comes on very quickly,”

4. “Influenza tends to be associated with more coughing, more myalgia (body aches), the fatigue, more headache. (With) the common cold, you would have more people complaining of nasal congestion, runny nose, sinus congestion. Less likely to have fever. Less likely to have body aches,”

5. For the most part, a cold will last about three to five days, then people start feeling better. But anything lasting five or more days could be the flu. “The influenza lasts a little longer than the common cold,” (Credits: https://on.today.com/3qcniFj )

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1.While people with colds might feel hot, a fever of 102 degrees or higher often signals that a person has the flu.

Even though a cold makes people feel miserable, they normally improve without a doctor’s help. “Colds are usually self-healing,”

5. For the most part, a cold will last about three to five days, then people start feeling better. But anything lasting five or more days could be the flu.

“The influenza lasts a little longer than the common cold,”

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On today’s show, we are speaking with Army veteran and patient advocate Tonya Henry. Tonya is joining us today to talk about gastroparesis. Tonya is a disabled veteran who has many illnesses. She was diagnosed with Autonomic Dysfunction secondary to Gulf War Illness. Autonomic Dysfunction causes issues with things such as temperature dysregulation, hypotension, hypoglycemia, orthostatic intolerance, and tachycardia and Gastroparesis. She has some other diseases that impact her life as well, but today we are focusing on Gastroparesis. This is Gastroparesis Awareness Month. She received the Gastroparesis Awareness Month Proclamation from the Mayor of Killeen, TX on August 9, 2022. She volunteers as an Oley Ambassador, which is someone who advocates and helps those with Gastroparesis or other GI illnesses that require a feeding tube, TPN (iv nutrition}, or an ostomy bag. She has had a jejunal feeding tube, a gj tube and currently a g tube to vent/drain only. She relies on TPN now for all of her nutrition and gets that through a port. She also has a gastric stimulator and a cardiac monitor implanted. She is also active in the migraine community as well. She writes and moderates for migraine.com. You can find her Oley Ambassador information on the site:

https://oley.org/page/ambassadorshpen

Her gastroparesis story was featured by a local news station back in 2019. Here is the link to that

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This week we will discuss Polio and Enterovirus (EV)-D68

Most people who get infected with poliovirus will not have any visible symptoms.

About 1 out of 4 people (or 25 out of 100) with poliovirus infection will have flu-like symptoms that can include:

Sore throat
Fever
Tiredness
Nausea
Headache
Stomach pain

These symptoms usually last 2 to 5 days, then go away on their own.

A smaller proportion of people with poliovirus infection will develop other, more serious symptoms that affect the brain and spinal cord:

Meningitis (infection of the covering of the spinal cord and/or brain)occurs in about 1–5 out of 100 people with poliovirus infection, depending on virus type
Paralysis (can’t move parts of the body) or weakness in the arms, legs, or both occurs in about 1 out of 200 people to 1 in 2000 people, depending on virus type

Paralysis is the most severe symptom associated with poliovirus because it can lead to permanent disability and death. Between 2 and 10 out of 100 people who have paralysis from poliovirus infection die, because the virus affects the muscles that help them breathe.

Even children who seem to fully recover can develop new muscle pain, weakness, or paralysis as adults, 15 to 40 years later. This is called post-polio syndrome.

Note that “poliomyelitis” (or “polio” for short) is defined as the paralytic disease. So only people with the paralytic infection are considered to have the disease. (Credits: CDC)

Enterovirus was first identified in California in 1962, enterovirus D68 (EV-D68) is one of more than 100 non-polio enteroviruses.

EV-D68 can cause mild to severe respiratory illness, or no symptoms at all.

Mild symptoms may include runny nose, sneezing, cough, body aches, and muscle aches.
Severe symptoms may include wheezing and difficulty breathing.

The link between Enterovirus D68 and a polio-like illness has been bolstered by new research showing a spike in both the virus and reports of acute flaccid myelitis in children in 2018, a new government report suggests.

The report by the Centers for Disease Control and Prevention reinforces previous research that the virus strikes every other year and in the late summer and early fall.

Anyone with respiratory illness should contact their doctor if they are having difficulty breathing or if their symptoms are getting worse. Seek immediate medical attention if you or your child develops any of these symptoms following a respiratory illness:

arm or leg weakness
pain in the neck, back, arms, or legs
difficulty swallowing or slurred speech
difficulty moving the eyes or drooping eyelids
facial droop or weakness

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This week we will discuss Monkeypox with Dr. Tiffany Najberg.

Dr. Tiffany Alexis Najberg Pronouns: She/her Physician licensed in the state of Louisiana Dr. Tiffany is a Board Certified Emergency Physician who has served in busy emergency departments and provided prehospital care as well as remote care since 2007. A transwoman currently transitioning herself, she is the first open trans woman Emergency Physician in Louisiana. She is a business owner who co owns her clinic, UrgentEMS, in Shreveport Louisiana. She practices urgent care, some primary care, and gender affirming care there and via telehealth throughout the state. Her experience in remote medical direction led her to begin practicing transgender medicine via telemedicine, as making it accessible to all, even in isolated locations, is something she cares deeply about. She received her medical degree at the University of North Texas in Fort Worth, completed her emergency medicine residency at LSU New Orleans (Charity Hospital), and her EMS fellowship with New Orleans EMS. She has been a teaching staff at Ochsner in New Orleans and St. Francis in Monroe, and has a passion for medical education. She still actively instructs medical students at her clinic. Her non medical interests include amateur storm chasing, writing, all things social, and she is a fierce advocate for public health, trans rights, women’s rights, and lgbtq+ issues through her sizable online platforms.

Dr. Tiffany goes more in depth about this new form of pox quickly spreading around the world.

Symptoms of monkeypox can include

Fever
Headache
Muscle aches and backache
Swollen lymph nodes
Chills
Exhaustion
Respiratory symptoms (e.g. sore throat, nasal congestion, or cough)
A rash that may be located on or near the genitals (penis, testicles, labia, and vagina) or anus (butthole) but could also be on other areas like the hands, feet, chest, face, or mouth.
- The rash will go through several stages, including scabs, before healing.
- The rash can look like pimples or blisters and may be painful or itchy.

You may experience all or only a few symptoms

Sometimes, people get a rash first, followed by other symptoms. Others only experience a rash.
Most people with monkeypox will get a rash.
Some people have developed a rash before (or without) other symptoms.

Monkeypox symptoms usually start within 3 weeks of exposure to the virus. If someone has flu-like symptoms, they will usually develop a rash 1-4 days later.

Monkeypox can be spread from the time symptoms start until the rash has healed, all scabs have fallen off, and a fresh layer of skin has formed. The illness typically lasts 2-4 weeks.

If You Have a New or Unexplained Rash or Other Symptoms...

Avoid close contact, including sex or being intimate with anyone, until you have been checked out by a healthcare provider.
If you don’t have a provider or health insurance, visit a public health clinic near you.
When you see a healthcare provider, wear a mask, and remind them that this virus is circulating in the area.

Monkeypox spreads in a few ways.

Monkeypox can spread to anyone through close, personal, often skin-to-skin contact, including:
- Direct contact with monkeypox rash, scabs, or body fluids from a person with monkeypox.
- Touching objects, fabrics (clothing, bedding, or towels), and surfaces that have been used by someone with monkeypox.
- Contact with respiratory secretions.
This direct contact can happen during intimate contact, including:
- Oral, anal, and vaginal sex or touching the genitals (penis, testicles, labia, and vagina) or anus (butthole) of a person with monkeypox.
- Hugging, massage, and kissing.
- Prolonged face-to-face contact.
- Touching fabrics and objects during sex that were used by a person with monkeypox and that have not been disinfected, such as bedding, towels, fetish gear, and sex toys.
A pregnant person can spread the virus to their fetus through the placenta.

It’s also possible for people to get monkeypox from infected animals, either by being scratched or bitten by the animal or by preparing or eating meat or using products from an infected animal.

A person with monkeypox can spread it to others from the time symptoms start until the rash has fully healed and a fresh layer of skin has formed. The illness typically lasts 2-4 weeks.

Scientists are still researching:

If the virus can be spread when someone has no symptoms
How often monkeypox is spread through respiratory secretions, or when a person with monkeypox symptoms might be more likely to spread the virus through respiratory secretions.
Whether monkeypox can be spread through semen, vaginal fluids, urine, or feces.

Protect Yourself and Others

Following the recommended prevention steps and getting vaccinated if you were exposed to monkeypox or are at higher risk of being exposed to monkeypox can help protect you and your community.

Take the following steps to prevent getting monkeypox:

Avoid close, skin-to-skin contact with people who have a rash that looks like monkeypox.
- Do not touch the rash or scabs of a person with monkeypox.
- Do not kiss, hug, cuddle or have sex with someone with monkeypox.
- Avoid contact with objects and materials that a person with monkeypox has used.
- Do not share eating utensils or cups with a person with monkeypox.
- Do not handle or touch the bedding, towels, or clothing of a person with monkeypox.
- Wash your hands often with soap and water or use an alcohol-based hand sanitizer, especially before eating or touching your face and after you use the bathroom.

In Central and West Africa, avoid contact with animals that can spread monkeypox virus, usually rodents and primates. Also, avoid sick or dead animals, as well as bedding or other materials they have touched.

CDC recommends vaccination for people who have been exposed to monkeypox and people who may be more likely to get monkeypox.

People more likely to get monkeypox include:

People who have been identified by public health officials as a contact of someone with monkeypox
People who are aware that one of their sexual partners in the past 2 weeks has been diagnosed with monkeypox
People who had multiple sexual partners in the past 2 weeks in an area with known monkeypox
People whose jobs may expose them to orthopoxviruses, such as:
- Laboratory workers who perform testing for orthopoxviruses
- Laboratory workers who handle cultures or animals with orthopoxviruses
- Some designated healthcare or public health workers

Treatment

There are no treatments specifically for monkeypox virus infections. However, monkeypox and smallpox viruses are genetically similar, which means that antiviral drugs and vaccines developed to protect against smallpox may be used to prevent and treat monkeypox virus infections.

Antivirals, such as tecovirimat (TPOXX), may be recommended for people who are more likely to get severely ill, like patients with weakened immune systems.

If you have symptoms of monkeypox, you should talk to your healthcare provider, even if you don’t think you had contact with someone who has monkeypox.

(Credits: CDC)

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This week we have the honor of speaking with Brenda and Aaron Luter. They have been married 23 years and live in St. Louis with their 2 sons, Josh and Alex. Josh was in a motorcycle accident his freshman year of college at SIU Carbondale in April of 2021. Alex just completed his freshman year at University of Arkansas. Josh recently came home from the hospital in February of 2022. Josh has a severe traumatic brain injury, including several strokes. Josh is unable to care for himself and is completely dependent on others for his daily care. Brenda is a former substitute teacher and Aaron is a sales engineer. If you would like to help this family in their recovery: https://bit.ly/3SBrsn6

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This week we will discuss the basics about Monkeypox. We will have Dr. Tiffany Najberg on the show in two weeks to go more in depth about this new form of pox quickly spreading around the world.

Symptoms of monkeypox can include:

Fever
Headache
Muscle aches and backache
Swollen lymph nodes
Chills
Exhaustion
Respiratory symptoms (e.g. sore throat, nasal congestion, or cough)
A rash that may be located on or near the genitals (penis, testicles, labia, and vagina) or anus (butthole) but could also be on other areas like the hands, feet, chest, face, or mouth.
- The rash will go through several stages, including scabs, before healing.
- The rash can look like pimples or blisters and may be painful or itchy.

You may experience all or only a few symptoms

Sometimes, people get a rash first, followed by other symptoms. Others only experience a rash.
Most people with monkeypox will get a rash.
Some people have developed a rash before (or without) other symptoms.

Monkeypox symptoms usually start within 3 weeks of exposure to the virus. If someone has flu-like symptoms, they will usually develop a rash 1-4 days later.

Monkeypox can be spread from the time symptoms start until the rash has healed, all scabs have fallen off, and a fresh layer of skin has formed. The illness typically lasts 2-4 weeks.

If You Have a New or Unexplained Rash or Other Symptoms... * Avoid close contact, including sex or being intimate with anyone, until you have been checked out by a healthcare provider. * If you don’t have a provider or health insurance, visit a public health clinic near you. * When you see a healthcare provider, wear a mask, and remind them that this virus is circulating in the area.

Monkeypox spreads in a few ways.

Monkeypox can spread to anyone through close, personal, often skin-to-skin contact, including:
- Direct contact with monkeypox rash, scabs, or body fluids from a person with monkeypox.
- Touching objects, fabrics (clothing, bedding, or towels), and surfaces that have been used by someone with monkeypox.
- Contact with respiratory secretions.
This direct contact can happen during intimate contact, including:
- Oral, anal, and vaginal sex or touching the genitals (penis, testicles, labia, and vagina) or anus (butthole) of a person with monkeypox.
- Hugging, massage, and kissing.
- Prolonged face-to-face contact.
- Touching fabrics and objects during sex that were used by a person with monkeypox and that have not been disinfected, such as bedding, towels, fetish gear, and sex toys.
A pregnant person can spread the virus to their fetus through the placenta.

It’s also possible for people to get monkeypox from infected animals, either by being scratched or bitten by the animal or by preparing or eating meat or using products from an infected animal.

A person with monkeypox can spread it to others from the time symptoms start until the rash has fully healed and a fresh layer of skin has formed. The illness typically lasts 2-4 weeks.

Scientists are still researching:

If the virus can be spread when someone has no symptoms
How often monkeypox is spread through respiratory secretions, or when a person with monkeypox symptoms might be more likely to spread the virus through respiratory secretions.
Whether monkeypox can be spread through semen, vaginal fluids, urine, or feces.

Protect Yourself and Others Following the recommended prevention steps and getting vaccinated if you were exposed to monkeypox or are at higher risk of being exposed to monkeypox can help protect you and your community.

Take the following steps to prevent getting monkeypox:

Avoid close, skin-to-skin contact with people who have a rash that looks like monkeypox.
- Do not touch the rash or scabs of a person with monkeypox.
- Do not kiss, hug, cuddle or have sex with someone with monkeypox.
Avoid contact with objects and materials that a person with monkeypox has used.
- Do not share eating utensils or cups with a person with monkeypox.
- Do not handle or touch the bedding, towels, or clothing of a person with monkeypox.
Wash your hands often with soap and water or use an alcohol-based hand sanitizer, especially before eating or touching your face and after you use the bathroom.

CDC recommends vaccination for people who have been exposed to monkeypox and people who may be more likely to get monkeypox.

People more likely to get monkeypox include: * People who have been identified by public health officials as a contact of someone with monkeypox * People who are aware that one of their sexual partners in the past 2 weeks has been diagnosed with monkeypox * People who had multiple sexual partners in the past 2 weeks in an area with known monkeypox

People whose jobs may expose them to orthopoxviruses, such as:
- Laboratory workers who perform testing for orthopoxviruses
- Laboratory workers who handle cultures or animals with orthopoxviruses
- Some designated healthcare or public health workers

Treatment

Antivirals, such as tecovirimat (TPOXX), may be recommended for people who are more likely to get severely ill, like patients with weakened immune systems.

If you have symptoms of monkeypox, you should talk to your healthcare provider, even if you don’t think you had contact with someone who has monkeypox.

(Credits: CDC)

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In this episode we will discuss tick-borne illnesses with Dr. Richard Horowitz. Dr. Richard Horowitz, MD is a board-certified internist with 30+ years of experience treating over 13,000 patients for tick-borne disorders and complex autoimmune conditions. He is the author of two national best-selling books on Lyme disease (Why Can't I Get Better? St Martin's Press, 2013, NY Times Best Seller; How Can I Get Better? St Martin's Press, 2017, National Bestseller). Listen to today's episode to learn more about these pesty parasitic arachnids!

There are over 800 different species of ticks in the world and over 100 of these are found in North America. The good news is you will probably never encounter most species of ticks in your lifetime. Only a handful of tick species come into contact with humans.

Contrary to popular belief, a tick isn’t an insect, but rather falls into the category of arachnids. Other examples of arachnids include spiders, scorpions, and mites.

People who work, camp, play, or visit wooded and grassy areas are at the highest risk of getting bitten by ticks. Pets are also highly susceptible to tick bites due to their exploratory nature.

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In this episode we will discuss Crohns Disease with those great Spoonies from "The Real Life Show: Living With A Chronic Illness"-

Cassie Da'Luz Vieira and Chelsea Sondergard!

Crohn's disease is a type of inflammatory bowel disease (IBD). It causes inflammation of your digestive tract, which can lead to abdominal pain, severe diarrhea, fatigue, weight loss and malnutrition.

Inflammation caused by Crohn's disease can involve different areas of the digestive tract in different people. This inflammation often spreads into the deeper layers of the bowel.

Crohn's disease can be both painful and debilitating, and sometimes may lead to life-threatening complications.

While there's no known cure for Crohn's disease, therapies can greatly reduce its signs and symptoms and even bring about long-term remission and healing of inflammation. With treatment, many people with Crohn's disease are able to function well. (Credits MAYO Clinic)

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In this episode we will discuss Hypertrophic Olivary Degeneration (H.O.D.) once again, this time with a new guest, Brad Asher.

Hypertrophic olivary degeneration (HOD) a rare neurological condition caused by degeneration in the brain stem, the structure that connects the brain to the spinal cord. Signs and symptoms include palatal tremors, lack of movement coordination (ataxia), Holmes tremor, vision problems, muscle weakness, and gait impairment, along with an MRI showing enlargement (hypertrophy) of the inferior olivary nucleus. (CREDITS: NORD)

Brad managed Health Clubs for 20 years and sold commercial and personal lines of Insurance for 20 years as well. He retired because of HOD at age 59.

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In this episode we will discuss Colon Cancer. Since we don't have a guest this week it will be just the hosts this week.

Colon cancer is a type of cancer that begins in the large intestine (colon). The colon is the final part of the digestive tract.

Colon cancer typically affects older adults, though it can happen at any age. It usually begins as small, noncancerous (benign) clumps of cells called polyps that form on the inside of the colon. Over time some of these polyps can become colon cancers.

Polyps may be small and produce few, if any, symptoms. For this reason, doctors recommend regular screening tests to help prevent colon cancer by identifying and removing polyps before they turn into cancer.

If colon cancer develops, many treatments are available to help control it, including surgery, radiation therapy and drug treatments, such as chemotherapy, targeted therapy and immunotherapy.

Colon cancer is sometimes called colorectal cancer, which is a term that combines colon cancer and rectal cancer, which begins in the rectum.

. (Credits: MAYO Clinic)

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In this episode we will discuss "Magic Mushrooms" with our guest, Del Jolly.

Del Jolly, Co-Founder of Umbo, Unlimited Sciences and expert in functional mushrooms, states the research at Unlimited Sciences collects real-world data on psychedelic use so that we can more quickly understand how to use these drugs safely and effectively for our health and overall wellbeing.

Advocate & Educator. Focused on shifting the cultural narrative, Del worked as part of Decriminalize Denver and Charlotte’s Web CBD before co-founding Unlimited Sciences, a psychedelic research nonprofit partnered with the likes of Johns Hopkins University. He believes functional mushrooms have just as much, if not more, potential than psychedelics and is committed to exploring and unearthing everything we can. “With a focus on mental health becoming an important topic, the ways in which we address these issues are changing. Decriminalizing psychedelics, before legalization, is the most equitable solution we currently have under our system. And allowing humans to take their health and well-being into their own hands, without the fear of criminal repercussions isn't only the right thing to do, but the moral thing. Decriminalization and then the legalization of psychedelics is long overdue,” says Jolly.

Magic mushrooms are wild or cultivated mushrooms that contain psilocybin, a naturally-occurring psychoactive and hallucinogenic compound. Psilocybin is considered one of the most well-known psychedelics, according to the Substance Abuse and Mental Health Services Administrations (SAMHSA).1

Psilocybin is classified as a Schedule I drug, meaning that it has a high potential for misuse and has no currently accepted medical use in treatment in the United States. (Credits: Verywell Health)

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In this episode we will discuss heat injuries and dehydration. As summer jumps in with both feet, so must we! Please listen, share, and take care of one another.

There will not be a guest this week, we will discuss the topic in forum. We hope you will listen and share this important topic.

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Sometimes it's the simple things that make a difference in our healthcare. Getting a regular check-up is part of what can keep small things that are easily treatable from turning into a more difficult problem down the line! This episode is part one of two and will be discussing Oral/Dental Health. We will cover general health questions in a few weeks.

Preventive dentistry is the practice of caring for your teeth to keep them healthy. This helps to avoid cavities, gum disease, enamel wear, and more.

There are many forms of preventive dentistry, such as daily brushing and dental cleanings. To maintain optimal oral health, the American Dental Association (ADA) recommends visits to the dentist at regular intervals determined by a dentist. These practices are designed to ensure that teeth are clean, strong, and white. Children should be taught proper oral hygiene at an early age. (Credits: https://bit.ly/3Qu5ku6 Healthline)

Want to know more? Listen to this week's episode!

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You have a chronic illness, new diagnosis, rare disease or are a caregiver for one of the above.... You really want to get your story told! There are others in the world that can benefit from understanding your story, but how do you even start?

One idea is to become a guest on a show like ours, another could be writing a blog, or a book, or an article! Want to know more? Listen to this week's episode!

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Sandra Hamilton, Founder of Cure-Cancer @UCL Institute

We have the honor of speaking again today with Sandra Hamilton of the "Cure-Cancer Foundation" (CCF) which supports the University College London, Non-Hodgkin's Lymphoma Cancer Research Division. She will discuss how the financial toll of this disease has affected her and her family, and what she has found helpful in this journey. She is joined today by her friend and colleague Julia Selt, the Coordinator at CCF.

This week we are talking about the cost factors of having a diagnosis of Non-Hodgkin's Lymphoma. "Non-Hodgkin's lymphoma (NHL) is not a single disease entity but covers a complex group of different types of malignancy. They differ in the cells affected, their course and the structures they form in the lymph glands. The unifying feature of the lymphomas as a whole is that they are all cancerous growths of lymphocytes. These are cells of the immune system which are produced from bone marrow and are located within the lymph glands. Lymphocytes are designed to fight infection by either directly producing or helping to produce antibodies. (credits: Office of Home Economics /UK https://bit.ly/3t7sIn7)

With the incidence of this cancer increasing (4% /year since 1950 ) this is a cancer that is wreaking havoc on the over 65 year old population not only in the health aspects but also the financial pains it can bring as well.

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This week we are talking about Hepatitis means inflammation of the liver. The liver is a vital organ that processes nutrients, filters the blood, and fights infections. When the liver is inflamed or damaged, its function can be affected. Heavy alcohol use, toxins, some medications, and certain medical conditions can cause hepatitis. However, hepatitis is often caused by a virus. In the United States, the most common types of viral hepatitis are hepatitis A, hepatitis B, and hepatitis C. (CREDITS: CDC What is Viral Hepatitis? | CDC)

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Medicines are used to treat diseases, manage conditions, and relieve symptoms. Medicines are generally safe when used as prescribed or as directed on the label, but there are risks in taking any medicine.

Each year in the United States, adverse drug events – harm resulting from medication use – cause more than one million visits to hospital emergency departments. Learning about medication safety can reduce and even prevent the risk of harm for you and your loved ones.

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This week we are talking once again with Anna, this time about Crohn's Disease and Gastroparesis. Anna is a 35 year old female who has an independent spirit inside of a body that holds an alphabet of health conditions. Anna worked as a case manager for individuals with intellectual and developmental disabilities where she loved to advocate for her clients. When her health forced her to take a step back from working things have been rough as she looks for a new way to advocate for herself and for others. She has struggled with different health issues most of her life but the battle that lead to her to become disabled started in July of 2018. Currently she has been diagnosed with Ehlers Danlos Syndrome, Gastroparesis, POTS, MS, Addisons, Crohn's, Hypoglycemia, MCAS, TPN dependent, Failure to thrive and more.

Inflammation caused by Crohn's disease can involve different areas of the digestive tract in different people. This inflammation often spreads into the deeper layers of the bowel.

Crohn's disease can be both painful and debilitating, and sometimes may lead to life-threatening complications.

Gastroparesis is a chronic disorder which means delayed stomach emptying without a blockage. In healthy people, when the stomach is functioning normally, contractions of the stomach help to crush ingested food and then propel the pulverized food into the small intestine where further digestion and absorption of nutrients occurs. (CREDITS: Am. College of Gastroenterology)

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This week we are talking about organoids. Scientists have shown over the past decade or so that organoids—small, organ-like structures grown in culture from stem cells—can integrate into many organs, including the liver, lungs, and guts of mice, and repair defects. In a study published today (February 18) in Science, researchers have advanced this approach in human tissue, and demonstrate that organoids derived from adult cholangiocytes, the cells that line the bile ducts, can integrate into human livers from deceased organ donors. The findings pave the way for new treatments for liver diseases, as well as for the repair of donated organs to make more available for transplant. (credits: https://bit.ly/3LBnyqw)

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This week we're talking about FCCM or, Familial cerebral cavernous malformation, with Megan. [FCCM is] ..." a rare, capillary-venous malformations characterized by closely clustered irregular dilated capillaries that can be asymptomatic or that can cause variable neurological manifestations such as seizures, non-specific headaches, progressive or transient focal neurologic deficits, and/or cerebral hemorrhages". (credits: GARD)

Megan is a mom to twins — identical 17-year-old girls — and a 13-year-old son. She, her husband, and kids live just outside of Phoenix. She is a writer, caregiver, and mom.

Maybe most importantly, Megan is also an advocate for rare diseases and rare disease parenting.

She is currently the chair to the Arizona Angioma Community Alliance in her “free” time. Follow her on Facebook , Instagram, or Twitter or her brand new website meganloden.com

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On today's show we are speaking with Christina Coates about Hypertrophic olivary degeneration (HOD) a rare neurological condition caused by degeneration in the brain stem, the structure that connects the brain to the spinal cord. Signs and symptoms include palatal tremors, lack of movement coordination (ataxia), Holmes tremor, vision problems, muscle weakness, and gait impairment, along with an MRI showing enlargement (hypertrophy) of the inferior olivary nucleus. (CREDITS: NORD)

In 2017, Christina was diagnosed with a small Cavernous Malformation with a previous hemorrhage in her cerebellum. In 2021, she had a craniotomy to remove the malformation, and developed HOD on her medulla. Her symptoms began a few months after the Cavernoma resection. Creating HODA is a passion project for Christina, with the hope of replicating the success of The Angioma Alliance. Christina has worked in Accounting and Finance for her entire career and enjoys her volunteer work with the Arizona chapter of the Angioma Alliance. Christina relishes the opportunities she has to attend and support the Arizona Cardinals, reading, and outdoors activities as her symptoms permit.

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On this episode we have the honor of speaking with Robyn A. Maguire. She is a mother to 3 wonderful children. Her oldest is learning how to drive and excelling in her academics as a freshman in high school. Her middle child’s super into sports and music. Right now he’s teaching himself how to play the guitar. Her youngest son Zeke, smiles like sunshine, he warms the room. Funny, because his condition, Shapiro’s syndrome gives him hypothermia. Along with the joy of being their mom, Robyn is a bartender, student, enjoys yoga, and is a music enthusiast. She loves to see live music and Zeke’s dad shares the same passion. She is sharing Zeke's story so others with this condition will not feel so alone.

Shapiro syndrome is an extremely rare disorder consisting of paroxysmal hypothermia (due to hypothalamic dysfunction of thermoregulation), hyperhydrosis (sweating), and agenesis of the corpus callosum with onset typically on adulthood. The disease affects about 50 people worldwide. The duration and frequency of the episodes vary from person to person, with some episodes lasting hours to weeks and occurring from hours to years. Very little is known about the disease due to the small number of people affected.

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This week marks four years as co-hosts on PodcastDX. For today's show we will be recalling some of our most memorable interviews from these past four years. We have had the honor of speaking with 151 guests and have posted 209 episodes so it wasn't an easy task but with input from everyone on the team, I think we had success!

I want to take the time to thank our listeners from around the world.

THANK YOU!!

There isn't a day that goes by that I am not amazed that we have come so far! Over 54 countries and a quarter of a million listeners are wondering what will the next year bring!

You'll have to check our "Future Episodes" page to find out more, but for today, I really hope you enjoy our show!

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Factitious Disorder Imposed on Another (FDIA), also known as Munchausen Syndrome by Proxy (MSbP) is a very serious form of child abuse. The perpetrator, usually the mother, invents symptoms or causes real ones in order to make her child appear sick. Our guest today, Craig Lewis, not only survived the ordeal but has written a book on his experiences and is a Peer Counselor to help others.

Craig recently published his book ‘Better Days’ Craig continues to rise ever higher on his mission to be the living proof to all, that surviving the impossible, is entirely possible.

Knowing that FDIA Munchausen's can scar a person and possibly keep a person from receiving health care that IS needed, I thought it best to do a quick "check in" with Craig to see how he is doing with COVID and everything that goes along with it!

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On this week's episode we are discussing Tuberculosis, or TB. Currently the infection has a rate of infection that is only 2.2 per 100,000 persons. TB is more common in countries where many people live in absolute poverty because people are more likely to:

live and work in poorly ventilated and overcrowded conditions, which provide ideal conditions for TB bacteria to spread
suffer from malnutrition and disease – particularly HIV – which reduces resistance to TB
have limited access to healthcare – and just one person with untreated infectious TB can pass the illness on to 10-15 people annually.

Other TB Facts:

A total of 1.5 million people died from TB in 2020 (including 214 000 people with HIV). Worldwide, TB is the 13th leading cause of death and the second leading infectious killer after COVID-19 (above HIV/AIDS).
In 2020, an estimated 10 million people fell ill with tuberculosis (TB) worldwide. 5.6 million men, 3.3 million women and 1.1 million children. TB is present in all countries and age groups. But TB is curable and preventable.
In 2020, 1.1 million children fell ill with TB globally. Child and adolescent TB is often overlooked by health providers and can be difficult to diagnose and treat.
In 2020, the 30 high TB burden countries accounted for 86% of new TB cases. Eight countries account for two thirds of the total, with India leading the count, followed by China, Indonesia, the Philippines, Pakistan, Nigeria, Bangladesh and South Africa.
Multidrug-resistant TB (MDR-TB) remains a public health crisis and a health security threat. Only about one in three people with drug resistant TB accessed treatment in 2020.
Globally, TB incidence is falling at about 2% per year and between 2015 and 2020 the cumulative reduction was 11%. This was over half way to the End TB Strategy milestone of 20% reduction between 2015 and 2020.
An estimated 66 million lives were saved through TB diagnosis and treatment between 2000 and 2020.
Globally, close to one in two TB-affected households face costs higher than 20% of their household income, according to latest national TB patient cost survey data. The world did not reach the milestone of 0% TB patients and their households facing catastrophic costs as a result of TB disease by 2020.
By 2022, US$ 13 billion is needed annually for TB prevention, diagnosis, treatment and care to achieve the global target agreed at the UN high level-meeting on TB in 2018.
Funding in low- and middle-income countries (LMICs) that account for 98% of reported TB cases falls far short of what is needed. Spending in 2020 amounted to US$ 5.3 billion less than half (41%) of the global target.
There was an 8.7% decline in spending between 2019 and 2020 (from US$ 5.8 billion to US$ 5.3 billion), with TB funding in 2020 back to the level of 2016.
Ending the TB epidemic by 2030 is among the health targets of the United Nations Sustainable Development Goals (SDGs).

Tuberculosis (TB) is caused by bacteria (Mycobacterium tuberculosis) that most often affect the lungs. Tuberculosis is curable and preventable.

About one-quarter of the world's population has a TB infection, which means people have been infected by TB bacteria but are not (yet) ill with the disease and cannot transmit it.

Who is most at risk? Tuberculosis mostly affects adults in their most productive years. However, all age groups are at risk. Over 95% of cases and deaths are in developing countries.

Diagnosing multidrug-resistant and other resistant forms of TB (see Multidrug-resistant TB section below) as well as HIV-associated TB can be complex and expensive.

Tuberculosis is particularly difficult to diagnose in children.

Treatment TB is a treatable and curable disease. Active, drug-susceptible TB disease is treated with a standard 6-month course of 4 antimicrobial drugs that are provided with information and support to the patient by a health worker or trained volunteer. Without such support, treatment adherence is more difficult.

Since 2000, an estimated 66 million lives were saved through TB diagnosis and treatment. (credits: WHO)

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Our guest on today's show is Dan Dry Dock Shockley, a retired Navy, Operation Desert Storm; Enduring and Iraqi Freedom veteran and 10 year hereditary colon cancer WARRIOR. One of the risk factors for colorectal cancer is a family history of the disease. Colorectal cancer is called "hereditary" or "inherited" when several generations of a family have it.

Experts have found gene changes (also known as mutations or abnormalities) that cause colorectal cancer. A gene is a block of DNA that holds the genetic code, or instructions, for making proteins vital to our bodily functions.

The children of people who carry these genes have a 50% chance of getting them from their parents.

The two most common inherited colorectal cancer syndromes are hereditary nonpolyposis colorectal cancer (HNPCC) and familial adenomatous polyposis (FAP). These two account for less than 5% of all colorectal cancers.

Hereditary Nonpolyposis Colorectal Cancer (Lynch Syndrome) HNPCC, also known as Lynch syndrome, is the most common form of hereditary colon cancer, accounting for about 3% of all colorectal cancer diagnoses each year. People with HNPCC often have at least three family members and two generations with colorectal cancer, and cancer develops before age 50.

lthough not everyone who inherits the HNPCC gene will get colorectal cancer, the risk is very high: about 80%. People with HNPCC also have a higher risk of other Lynch syndrome-related cancers, including brain, kidney, ovarian, uterine, bladder, pancreatic, small intestine, and stomach cancers.

Doctors can check the pattern of colorectal cancer in relatives in order to find out if the family has HNPCC. "HNPCC families" must show certain signs of a pattern of colon cancer across generations. These are called the Amsterdam Criteria and include:

At least three members with a Lynch syndrome-related cancer
At least two successive generations with this type of cancer
Two family members with the disease are first-degree relatives (i.e. parents, brothers, sisters, or children) of another family member with a Lynch syndrome cancer
At least one member affected at or before age 50
FAP is excluded from the family member's diagnosis

Check with your doctor if you think this applies to your family. Colonoscopies are recommended in family members who are 10 years younger than the youngest family member who was diagnosed with cancer. You should also be screened for other Lynch syndrome-related cancers. For people with a diagnosis of Lynch syndrome, screening usually starts between ages 20 and 25.

Familial Adenomatous Polyposis (FAP) Syndrome Familial adenomatous polyposis (FAP) is a rare condition marked by the presence of hundreds or thousands of benign polyps, noncancerous growths in the large intestine and upper respiratory tract. It’s thought to happen in about 1% of all people diagnosed with colorectal cancer each year.

The polyps start early, with 95% of people with FAP getting them by age 35, and are often found in patients in their teens, with 50% having polyps by age 15. Without colon removal, there is almost a 100% chance that some of the polyps will become cancer, usually by age 40. Thyroid cancer is also linked with FAP.

Although most cases of FAP are inherited, nearly a third are the result of a spontaneous (newly occurring) gene change. For people who develop a new gene mutation, they might pass the FAP gene on to their children.

What Is the FAP Gene? Genes are tiny segments of DNA that control how cells function, such as telling them when to divide and grow. One copy of each gene comes from your mother; the other comes from your father.

In 1991, researchers identified the gene called APC that is responsible for the condition. It can be found in 82% of patients with FAP. The lifetime risk of colon cancer in people who have this gene change is close to 100%.

What’s the Difference Between FAP and HNPCC? The two main differences between FAP and HNPCC are:

Number of genes involved. In FAP, only one gene, APC, has a mutation. In HNPCC, several gene changes may be responsible for the condition.
Presence of polyps. FAP is marked by the presence of more than 100 benign polyps. People with HNPCC have fewer polyps, but they can become cancerous more quickly than normal.

Other Forms of Inherited Polyposis Syndromes Other very rare forms of inherited polyposis syndromes are linked with a higher risk of colorectal cancer. These include:

Juvenile polyposis (JP). You may have five to 500 polyps, mostly in the colon and rectum. They usually happen before the age of 10. The stomach and small intestine may also be affected. People who have JP are also more likely to get bowel cancer.
Peutz-Jeghers syndrome (PJS). People with PJS typically have dozens to thousands of benign polyps in the stomach and intestines, mostly in the small intestine. The growths can become malignant or can cause a blockage of the bowel.

Ashkenazi Jews and Colorectal Cancer Jewish people who are Ashkenazi, or of Eastern European descent, are at increased risk for colorectal cancer. This is thought to be due to a variant of the APC gene that is found in 6% of this population. Ashkenazi Jews make up the majority of the Jewish population in the U.S.

If you suspect that you are at risk for Jewish people who are Ashkenazi, or of Eastern European descent, are at a higher risk for colorectal cancer. This is thought to be due to a variant of the APC gene that is found in 6% of this population. Ashkenazi Jews make up the majority of the Jewish population in the U.S. inherited form of colorectal cancer, talk to your doctor. There may be a genetic test that can be performed to confirm your suspicions.

Gene Tests for Colorectal Cancer Blood tests can find the gene changes that make some people more likely to get FAP or HNPCC.

You might want to consider genetic counseling and testing if:

You’ve had more than 10 colon polyps
You’ve had colon polyps and other types of tumors
You’re of Ashkenazi Jewish descent and your family has a history of colon cancer or polyps

If you test positive for these gene changes, your doctor will probably recommend that you get a colonoscopy every year. This is a test that checks your colon for cancer or polyps.

If you’ve already had colon cancer or polyps, your doctor may talk to you about a colectomy, which is surgery to remove your colon.

Your relatives might want to consider genetic counseling and testing, too.

(credits WEBMD)

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Today's show features Anna Cooper. Anna is the sister of another one of our guests; Faith Cooper who talked with us S9E11 on JRA and S10E11 on EDS. Addison's disease, also called adrenal insufficiency, is an uncommon disorder that occurs when your body doesn't produce enough of certain hormones. In Addison's disease, your adrenal glands, located just above your kidneys, produce too little cortisol and, often, too little aldosterone.

Addison's disease occurs in all age groups and both sexes, and can be life-threatening. Treatment involves taking hormones to replace those that are missing.

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We have the honor of speaking once again with Sheila Ames, a registered nurse in Northern California who has been diagnosed with a rare type of a primary immunodeficiency known as common variable immunodeficiency or CVID for short. At the time of her diagnosis she was working as an ICU nurse and her first doctors order was: no more exposure to infectious patients. This diagnosis not only changed her career dramatically, it led her to following her life's purpose in opening her own health & wellness online coaching business to help others continue to find and work towards their life's purpose despite the hurdles that life gives us.

Causes

Symptoms & Diagnosis

Doctors can diagnose CVID by weighing factors including infection history, digestive symptoms, lab tests showing very low immunoglobulin levels, and low antibody responses to immunization.

Treatment

To learn more about CVID, visit the National Library of Medicine, Genetics Home Reference CVID site (Credits to NIH)

If you would like to reach out to our guest:

Sheila Ames BSN, RN, PHN

Holistic Health Coach

Business FB page: https://www.facebook.com/JourneyIntoWellness1

PID (primary immunodeficiency) group: https://www.facebook.com/groups/journeyintowellnesspid

Instagram: @journeyintowellnesscoaching

My website: journeyintowellness.net

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On today's show, we have the honor of speaking with Evelyn Gamble. Evelyn has been dealing with a condition called Hypogonadotropic Hypogonadism, a form of hypogonadism that is due to a problem with the pituitary gland or hypothalamus. Hypogonadism is a condition in which the male testes or the female ovaries produce little or no sex hormones. (credits: Medline Plus)

Hypogonadotropic hypogonadism can be congenital or acquired. Congenital hypogonadotropic hypogonadism is divided into anosmic hypogonadotropic hypogonadism (Kallmann syndrome) and congenital normosmic isolated hypogonadotropic hypogonadism (idiopathic hypogonadotropic hypogonadism). The incidence of congenital hypogonadotropic hypogonadism is approximately 1-10:100,000 live births, and approximately 2/3 and 1/3 of cases are caused by Kallmann syndrome (KS) and idiopathic hypogonadotropic hypogonadism, respectively. Acquired hypogonadotropic hypogonadism can be caused by drugs, infiltrative or infectious pituitary lesions, hyperprolactinemia, encephalic trauma, pituitary/brain radiation, exhausting exercise, abusive alcohol or illicit drug intake, and systemic diseases such as hemochromatosis, sarcoidosis and histiocytosis X. The clinical characteristics of hypogonadotropic hypogonadism are androgen deficiency and a lack/delay/stop of pubertal sexual maturation. Low blood testosterone levels and low pituitary hormone levels confirm the hypogonadotropic hypogonadism diagnosis. A prolonged stimulated intravenous GnRH test can be useful. In Kallmann syndrome, cerebral MRI can show an anomalous morphology or even absence of the olfactory bulb.

Therapy for hypogonadotropic hypogonadism depends on the patient's desire for future fertility. Hormone replacement with testosterone is the classic treatment for hypogonadism. Androgen replacement is indicated for men who already have children or have no desire to induce pregnancy, and testosterone therapy is used to reverse the symptoms and signs of hypogonadism. Conversely, GnRH or gonadotropin therapies are the best options for men wishing to have children. Hypogonadotropic hypogonadism is one of the rare conditions in which specific medical treatment can reverse infertility.

When an unassisted pregnancy is not achieved, assisted reproductive techniques ranging from intrauterine insemination to in vitro fertilization to the acquisition of viable sperm from the ejaculate or directly from the testes through testicular sperm extraction or testicular microdissection can also be used, depending on the woman's potential for pregnancy and the quality and quantity of the sperm. (Credits: NIH)

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Today we have the honor of speaking with Evelyn Morales. Evelyn is a beautiful young mother living in Texas, and has had some physical challenges over the past few years. I started following her on TikTok due to her super positive "I Can Do This!" attitude.

Evelyn's health journey began with a diagnosis of hypothyroidism. Hypothyroidism is when the thyroid gland doesn’t make enough of the thyroid hormone called thyroxine (T4). This causes the body’s system to slow down and can lead to symptoms like fatigue, feeling cold, weight gain due to fluid retention, dry skin, and hair loss.

She then was diagnosed with Chiari Malformation. Chiari malformations are structural defects in the base of the skull and cerebellum, the part of the brain that controls balance. Normally the cerebellum and parts of the brain stem sit above an opening in the skull that allows the spinal cord to pass through it (called the foramen magnum). When part of the cerebellum extends below the foramen magnum and into the upper spinal canal, it is called a Chiari malformation (CM).

This had her struggling for relief from the severe neck and shoulder pain, migraines, dizziness and nausea. When her doctor said surgery was the best option to help with all of the Chiari symptoms she should have been relieved, but due to the excess weight gain from her thyroid she wasn't a good candidate for brain surgery. That didn't stop Evelyn!

Her next step was to drop more than HALF OF HER 498 lbs! After successfully going through a gastric sleeve procedure and many hours of dedicated fitness routines she achieved that goal and was able to have her decompression surgery to stop the brain from crowding her spinal cord. Her beautiful daughter helped in her recovery, even to a point of changing the dressings at the base of her skull following surgery! A very brave young lady (like her mom)! From what I hear, she might be back on for another episode in the future (medical mysteries continue)!!

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On today’s show we are talking once again with Kathy Reagan Young! Kathy is a strong patient advocate in the MS world and hosts a website called FUMSnow and has her own podcast. She recently began teaching a course called “Patients Getting Paid” and is here to talk about that today. If you would like to find out more about Patients Getting Paid, you can check out Kathy's Facebook Page Here!

And to sign up for this great program you can go here!

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And to sign up for this great program you can go here!

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A cataract develops when the lens in your eye, which is normally clear, becomes foggy.

For your eye to see, light passes through a clear lens. The lens is behind your iris (colored part of your eye). The lens focuses the light so that your brain and eye can work together to process information into a picture.

When a cataract clouds over the lens, your eye can’t focus light in the same way. This leads to blurry vision or other vision loss (trouble seeing). Your vision change depends on the cataract’s location and size.

Who gets cataracts? Most people start getting cataracts around age 40. But you probably won’t notice symptoms until after age 60. Rarely, babies are born with cataracts due to a birth defect.

You’re more likely to develop cataracts if you:

Smoke cigarettes.
Live in an area with bad air pollution.
Use alcohol heavily.
Have a family history of cataracts.

How common are cataracts? Cataracts are common among older people. More than 50% of people age 80 and older have had cataracts.

Can you get cataracts in both eyes? You can get cataracts in both eyes. But one eye may be worse than the other or develop at a later time.

Symptoms and Causes What causes a cataract? The lens of your eye is mostly water and proteins. As proteins break down over time, they hang around in your eye. These lingering proteins can make your lens cloudy, so it’s hard to see clearly. This is a typical — though unpleasant — part of aging.

Some things can speed up the formation of cataracts, such as:

Diabetes.
Steroids, common medications to treat conditions like arthritis and lupus.
Phenothiazine drugs such as chlorpromazine (Thorazine®), used to treat a variety of conditions such as schizophrenia and bipolar disorder.
Eye surgery or eye injuries.
Radiation treatment to your upper body.
Spending a lot of time in the sun without eye protection, like sunglasses.

What are the symptoms of a cataract? Cataracts are a common part of the eye’s aging process. Eventually, they can cause:

Vision that’s cloudy, blurry, foggy or filmy.
Sensitivity to bright sunlight, lamps or headlights.
Glare (seeing a halo around lights), especially when you drive at night with oncoming headlights.
Prescription changes in glasses, including sudden nearsightedness.
Double vision.
Need for brighter light to read.
Difficulty seeing at night (poor night vision).
Changes in the way you see color.

Are cataracts painful? Cataracts don’t usually hurt. But they can cause discomfort by making your eyes more sensitive to light.

Diagnosis and Tests How is a cataract diagnosed? If you have cataract symptoms, see an eye doctor (ophthalmologist) for a complete exam. The doctor will need to dilate your pupil to see inside your eye. During this test, special eye drops widen your pupil (the black part of the eye). When the pupil is wide open, your doctor checks the health of your eye. Your doctor can see if you have cataracts or other problems and find out how much of your vision is blocked.

Management and Treatment How is a cataract treated? If your cataract symptoms are mild, you might just need a new prescription for glasses or contacts. Cataracts usually worsen over time, though. Eventually, your doctor will likely recommend surgery to remove the cataract.

At what stage should cataracts be removed? Most people wait until a cataract causes enough vision loss to be a problem, like making it hard to read or drive. Sometimes people need cataract surgery to see and treat other eye conditions, such as age-related changes in the retina (tissue at the back of the eye) or diabetic retinopathy.

Who removes cataracts? An ophthalmologist (doctor who specializes in eye health) performs cataract removal surgery.

How Are Cataracts Removed? During cataract surgery, the surgeon removes the clouded lens and replaces it with an artificial lens implant. The new lens is clear, shaped to fit your eye and personalized to your vision needs.

Cataract removal takes about an hour. It’s done with local anesthesia (medication to numb a specific area). Your doctor will use eye drops or a shot to numb your eye. You’ll be awake, but you won’t feel or see the procedure.

What are the different types of cataract surgery? There are two types of procedures to remove cataracts:

Phacoemulsification cataract surgery

Phacoemulsification is the most common procedure for cataracts. Your ophthalmologist makes a small opening in the eye to reach the clouded lens. Using high-frequency sound waves (ultrasound) or a laser, your ophthalmologist breaks the lens into pieces. Then the doctor suctions lens fragments from your eye and puts in a new plastic lens.

Extracapsular cataract surgery

Your doctor might recommend this procedure if the phacoemulsification technique isn’t a good option for you. For example, an advanced cataract might be too dense to break apart easily.

In extracapsular cataract surgery, your ophthalmologist makes a larger opening in the eye. Instead of breaking up the lens and then removing it, your doctor removes the lens in one piece. Then the surgeon inserts the manufactured lens.

What can I expect after surgery? After surgery, it’s typical to have a day or two of:

Itching.
Mild discomfort.
Watery eye.
Sensitivity to light.
Blurry vision.

For a few weeks after surgery, you may need to use eye drops. The drops help you heal, prevent infection and control the pressure inside your eye. During those weeks you’ll also want to avoid:

Touching your eyes.
Bending over.
Lifting heavy things.
Doing anything that risks injuring your eye.

How much time does it take to recover from cataract surgery? Your eye should heal within eight weeks. But you can go about your daily activities as soon as a day after the surgery.

Is Cataract Surgery Safe? Cataract surgery is one of the safest and most frequently performed surgeries in the U.S. The chance of any complications is extremely low. But you should always discuss the risks of any surgery with your doctor. Some people do have an infection or vision loss after the procedure.

How painful is cataract surgery? You shouldn’t feel anything during the cataract removal surgery. Afterward, you may have mild pain and discomfort. Your doctor can give you a pain reliever to use for the first day or two.

Prevention Can cataracts be prevented? Developing cataracts is a typical part of aging. You can take a few steps to protect your eye health and slow the process:

Quit smoking.
Wear sunglasses and a hat with a brim to keep sun out of your eyes.
Get regular eye care. Have your eyes dilated once every two years after age 60. Surgery may be easier if you get treated sooner.

Outlook / Prognosis How soon will my vision improve after surgery? You may have some blurriness for a few days after cataract removal. But you should notice improved vision within the first several weeks. Nine out of 10 people see better after cataract removal.

You still may need to wear glasses or contacts after cataract surgery. Your prescription may change, so be prepared to buy a new pair of eyeglasses or contacts. If you’ve had laser vision repair (LASIK®), you may need to repeat it or wear glasses or contacts after cataract removal.

Will I need to have cataract surgery again in the future? If both your eyes need cataract surgery, your doctor will probably schedule your surgeries several months apart. Separating the surgery gives both eyes a chance to heal. It also minimizes the disruption on your life. The lens implants for cataracts are permanent and usually don’t need to be replaced.

In some rare cases, you can develop what’s called a secondary cataract. Cloudiness builds up on the surface of the artificial lens weeks, months or years after surgery. It’s fixed with a quick laser surgery called posterior capsulotomy. The procedure takes just 5 minutes. Your ophthalmologist uses a laser to make an opening in the lens to let light in again. You sight should improve within 24 hours.

Living With Cataracts How can I see better without surgery? Early on, your vision loss from cataracts may be mild. You can try managing it by:

Using a magnifying glass for reading.
Wearing polarized sunglasses, which reduce glare.
Using brighter light bulbs, since it’s easier to see with more light.

(Credits : Cleveland Clinic)

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Winter storms and cold temperatures can be dangerous. Stay safe and healthy by planning ahead. Prepare your home and vehicles. Prepare for power outages and outdoor activity. Check on older adults.

Although winter comes as no surprise, many of us may not be ready for its arrival. If you are prepared for the hazards of winter, you are more likely to stay safe and healthy when temperatures start to fall.

Prepare Your Home Staying inside is no guarantee of safety. Take these steps pdf icon[PDF – 344 KB] to keep your home safe and warm during the winter months.

Winterize your home.
- Install weather stripping, insulation, and storm windows.
- Insulate water lines that run along exterior walls.
- Clean out gutters and repair roof leaks.
- Check your heating systems.
- Have your heating system serviced professionally to make sure that it is clean, working properly, and ventilated to the outside.
- Inspect and clean fireplaces and chimneys.
- Have a safe alternate heating source and alternate fuels available.
- If you do not have a working smoke detector, install one. Test batteries monthly and replace them twice a year.
- Prevent carbon monoxide (CO) poisoning emergencies.
- Install a CO detector to alert you of the presence of the deadly, odorless, colorless gas. Check or change the battery when you change your clocks in the fall and spring.
- Learn the symptoms of CO poisoning: headache, dizziness, weakness, upset stomach, vomiting, chest pain, and confusion.

Get your vehicle ready for cold weather use before winter arrives.

Prepare Your Vehicle Get your vehicle ready for cold weather use before winter arrives.

Service the radiator and maintain antifreeze level.
Check your tires’ tread or, if necessary, replace tires with all-weather or snow tires.
Keep the gas tank full to avoid ice in the tank and fuel lines.
Use a wintertime formula in your windshield washer.
Prepare a winter emergency kit to keep in your car in case you become stranded. The kit should include:
- Cell phone, portable charger, and extra batteries;
- Items to stay warm, such as extra hats, coats, mittens, blankets, or sleeping bags;
- Food and water;
- Booster cables, flares, tire pump, and a bag of sand or cat litter (for traction);
- Compass and maps;
- Flashlight, battery-powered radio, and extra batteries;
- First-aid kit; and
- Plastic bags (for sanitation).

Prepare for Emergencies Be prepared for weather-related emergencies, including power outages.

Stock food that needs no cooking or refrigeration and water stored in clean containers.
Ensure that your cell phone is fully charged.
When planning travel, be aware of current and forecast weather conditions.
Keep an up-to-date emergency kit pdf icon[PDF – 6.5 MB], including:
- Battery-operated devices, such as a flashlight, a National Oceanic and Atmospheric Administration (NOAA) Weather Radio, and lamps;
- Extra batteries;
- First-aid kit and extra medicine;
- Baby items; and
- Cat litter or sand for icy walkways.
- Protect your family from carbon monoxide (CO).
- Keep grills, camp stoves, and generators out of the house, basement and garage.
- Locate generators at least 20 feet from the house.
- Leave your home immediately if the CO detector sounds, and call 911.

Wear appropriate outdoor clothing: layers of light, warm clothing; windproof coat, mittens; hats; scarves; and waterproof boots.

Take Precautions Outdoors Outdoor activities can expose you to several safety hazards, but you can take these steps to prepare for them:

Wear appropriate outdoor clothing: wear a tightly woven, preferably wind-resistant coat or jacket; inner layers of light, warm clothing; mittens; hats; scarves; and waterproof boots.
Sprinkle cat litter or sand on icy patches.
Learn safety precautions to follow when outdoors.
- Work slowly when doing outside chores.
- Take a buddy and an emergency kit when you are participating in outdoor recreation.
- Carry a cell phone.

Do This When You Plan to Travel When planning travel, be aware of current and forecast weather conditions.

Avoid traveling when the National Weather Service has issued advisories.
If you must travel, inform a friend or relative of your proposed route and expected time of arrival.
Follow these safety rules if you become stranded in your vehicle.
- Make your vehicle visible to rescuers. Tie a brightly colored cloth to the antenna, raise the hood (if it is not snowing), and turn on the inside overhead lights (when your engine is running).
- Move anything you need from the trunk into the passenger area. Stay with your vehicle unless safety is no more than 100 yards away.
- Keep your body warm. Wrap your entire body, including your head, in extra clothing, blankets, or newspapers. Huddle with other people if you can.
- Stay awake and stay moving. You will be less vulnerable to cold-related health problems. As you sit, keep moving your arms and legs to improve circulation and stay warmer.
- Run the motor (and heater) for about 10 minutes per hour, opening one window slightly to let in air. Make sure that snow is not blocking the exhaust pipe—this will reduce the risk of carbon monoxide (CO) poisoning.

Be ready to check on family and neighbors who are especially at risk from cold weather hazards: young children, older adults, and the chronically ill.

If you have pets, bring them inside. If you cannot bring them inside, provide adequate, warm shelter and unfrozen water to drink.

No one can stop the onset of winter. However, if you follow these suggestions, you will be ready for it when it comes.

(Credits: CDC)

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Medications can help prevent some migraines and make them less painful. The right medicines, combined with self-help remedies and lifestyle changes, might help. (Credits: Mayo Clinic)

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According to Mayo Clinic Psoriasis is a skin disease that causes red, itchy scaly patches, most commonly on the knees, elbows, trunk and scalp.

Psoriasis is a common, long-term (chronic) disease with no cure. It tends to go through cycles, flaring for a few weeks or months, then subsiding for a while or going into remission. Treatments are available to help you manage symptoms. And you can incorporate lifestyle habits and coping strategies to help you live better with psoriasis.

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Patients with Sickle Cell Disease (SCD), often have underlying cardiopulmonary co-morbidities that may predispose them to poor outcomes if they become infected with SARS-CoV-2.

Our returning guest today is Agnes Nsofwa RN,MsN,BBA
Founder and Executive Director
Australian Sickle Cell Advocacy Inc.

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In this episode we will discuss Myasthenia Gravis, an Autoimmune Disease affecting the neuromuscular system of the body with Tasha White. We spoke with Tasha a few years back and wanted to touch base and see how she is doing in the midst of the pandemic.

Tasha White, Director of a new Non-profit organization called "My Walk with MG" located in St. Louis, MO.

The CDC has announced authorization of an additional COVID-19 vaccine dose for people with compromised immune systems, including patients with myasthenia gravis (MG) taking immunosuppressive treatment(s). This recommendation is specifically for patients that completed the mRNA vaccines (Moderna and Pfizer). The recommendation does not apply to the Johnson & Johnson vaccine because available data are insufficient at this time.

Recent data suggests that patients with weakened immune systems, such as those on immune suppressing medication(s), may have a reduced protective immune response to the COVID-19 vaccine. An additional vaccine dose can increase the immune response to the vaccine. Although similar data specifically for patients with MG is lacking, given the currently available information, the widespread increase in the more contagious and severe delta variant, and the good safety profile of available SARS-coV2 vaccines, the potential benefit of the additional vaccine outweigh the risks. Therefore, the MGFA supports the CDC authorization of SARS-coV2 vaccines for patients with compromised immune systems and recommends that patients with MG taking immunosuppressives discuss getting an additional mRNA vaccine dose with their treating provider. SARS-coV2 vaccines may not be available in all areas. The MGFA continues to strongly support the use of recommended precautions to reduce the risk of getting a COVID infection (e.g., masking, social distancing, frequent handwashing, avoiding close interactions with non-immunized individuals, etc).

**Regardless of whether you are vaccinated, if you get a COVID infection, it is very important to immediately notify your treating provider(s), including your MG provider, to determine whether there should be changes to your treatment, such as a monoclonal antibody treatment.

We continue to recommend that you reference the CDC site.

https://www.cdc.gov/vaccines/covid-19/clinical-considerations/covid-19-vaccines-us.html

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She was forced to leave the workforce after ten years as a nurse; this gave her the patient medical experience and perspective. Being diagnosed and living with a chronic illness has given her the experience of everyday living so she understands both sides of the coin. Amber lives with Systemic Lupus, Migraines, Fibromyalgia, Interstitial Cystitis, IBS, Anxiety, Depression and Adrenal Insufficiency secondary to long term steroid use.

Since being forced to leave the traditional workforce due to her illnesses, she has become a strong patient advocate and blogger with her blog being “The World Sees Normal.”

Amber works with the Chronic Disease Coalition. She has had her work published by The Mighty, Yahoo and has been nominated for four WEGO Health Awards. She has published a symptom tracker for those with chronic conditions to track their symptoms and pain to share with their Drs. She understands the need for good communication between patients and doctors, but also support the chronic illness community, making sure those living with illnesses understand they are not alone or isolated.

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A hiatal hernia occurs when the upper part of your stomach bulges through the large muscle separating your abdomen and chest (diaphragm).

Your diaphragm has a small opening (hiatus) through which your food tube (esophagus) passes before connecting to your stomach. In a hiatal hernia, the stomach pushes up through that opening and into your chest.

A small hiatal hernia usually doesn't cause problems. You may never know you have one unless your doctor discovers it when checking for another condition.

But a large hiatal hernia can allow food and acid to back up into your esophagus, leading to heartburn. Self-care measures or medications can usually relieve these symptoms. A very large hiatal hernia might require surgery.

As discussed in earlier episodes, Lita has Ehlers Danlos and it turns out this is the cause of her fourth hernia we will talk about today.

"Gastrointestinal (GI) manifestations are found in Ehlers Danlos syndrome (EDS) hypermobility subtype (HM). We aimed to assess associations between EDS HM and other EDS subtypes with GI manifestations. Methods: We reviewed medical records of EDS patients evaluated at Mayo Clinic's Medical Genetics Clinic 1994-2013. We extracted information regarding EDS subtypes, GI manifestations, and treatments. Key Results: We identified 687 patients; 378 (56%) had associated GI manifestations (female 86.8%, diagnosis mean age 29.6 years). Of the patients identified, 58.9% (43/73) had EDS classic, 57.5% (271/471) EDS HM, 47.3% (27/57) EDS vascular subtypes. In addition, 86 patients had EDS that could not be classified in any of those three subtypes. Commonest GI symptoms were: abdominal pain (56.1%), nausea (42.3%), constipation (38.6%), heartburn (37.6%), and irritable bowel syndrome-like symptoms (27.5%). Many GI symptoms were commoner in EDS HM than the other subtypes together. Among 37.8% of the 378 patients who underwent esophagogastroduodenoscopy, the commonest abnormalities were gastritis, hiatal hernia and reflux esophagitis. Abnormal gastric emptying was observed in 22.3% (17/76): 11.8% delayed and 10.5% accelerated. Colonic transit was abnormal in 28.3% (13/46): 19.6% delayed and 8.7% accelerated. Rectal evacuation disorder was confirmed in 18/30 patients who underwent anorectal manometry. Angiography showed aneurysms in abdominal vessels in EDS vascular type. Proton pump inhibitors (38%) and drugs for constipation (23%) were the most commonly used medications. A minority underwent colectomy (2.9%) or small bowel surgery (4%). Conclusions & Inferences: EDS HM and other subtypes should be considered in patients with chronic functional GI symptoms and abdominal vascular lesions." (credits Mayo Clinic)

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Squeeze a world of passion, goal driven problem solver and an adventurous triathlete into 5 feet of fun and you get Faith Louise Cooper.

Facebook: https://www.facebook.com/cooperfa/. Faith Louise Cooper
Instrgram: https://www.instagram.com/speakingoftri/. Speakingoftri
LinkIn: www.linkedin.com/in/faith-cooper Faith Louise Cooper

In this episode she discusses the difficulties during COVID with EDS.

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Gina Rapacz is a 48 year old mother of 2 teenage daughters living in the Chicago suburbs. She recently had a liver transplant after hers failed and she lingered on the transplant list in Chicago for just over a year.

 Gina is a powerful woman who has endured a variety of personal tragedies. There is not a challenge she can't handle. It is this strength that has allowed her to get through the severity of her liver disease.

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Heeeeere's Kristine!

🆗More about the RARE. Girl behind the brand;

🥄I am a fierce lover of Grey’s Anatomy. Meredith Grey is my person.

🥄You can be sure that I’ll be either listening to Taylor Swift or True Crime.

🥄My favorite book is a Thesaurus

🥄I am a loyal Ticondaroga Pencil user

🥄I love to create & I am a huge nerd

🥄My Wardrobe can easily be mistaken for your grandmas & I love it

Change Starts Here. Connect With RARE.™

📱Share With Us 🔛@findyour rare on all social platforms #findyourrare

🛍 Shop your purpose 🔛 www.findyourrare.com

🎙 Because We Are Strong Podcast 🔛 www.bwspod.com

🗳 VPR Membership Club 🔛 findyourrare.info/vrp

✉️ Reach Out 🔛 info@findyourrare.com

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In this episode we will discuss not just continuing life after a horrific injury, but excelling and living life to it's fullest, minus two arms and two legs. United States Army Staff Sergeant Travis Mills of the 82nd Airborne was critically injured on his third tour of duty in Afghanistan by an IED (improvised explosive device) while on patrol, losing portions of both legs and both arms.

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For our very first Throwback Thursday episode we celebrate the bravery of our men and women that have served in the United States Armed Services!

In this episode we will discuss not just continuing life after a horrific injury, but excelling and living life to it's fullest, minus two arms and two legs. On April 10, 2012, United States Army Staff Sergeant Travis Mills of the 82nd Airborne was critically injured on his third tour of duty in Afghanistan by an IED (improvised explosive device) while on patrol, losing portions of both legs and both arms.

In September 2013, Travis and his wife Kelsey founded the Travis Mills Foundation, a nonprofit organization, formed to benefit and assist post 9/11 veterans who have been injured in active duty or as a result of their service to our nation. The veteran and their families receive an all-inclusive, all-expenses paid, barrier-free vacation to Maine where they participate in adaptive activities, bond with other veteran families, and enjoy much-needed rest and relaxation in Maine’s great outdoors.

If you are in a giving mood this year, the Travis Mills Foundation is a great way to give back to injured Veterans! (DONATE HERE)

TRANSCRIPT

PodcastDX-Quad_Amputee

Lita T 00:10

Hello and welcome to another episode of podcast dx. The show that brings you interviews with people just like you whose lives were forever changed by a medical diagnosis. I'm Lita

Ron 00:22

I'm Ron,

Jean 00:23

and I'm a pina colada.

Lita T 00:24

You're not a pina colada she's Jean Marie. Collectively we're the hosts of PodcastDX. On today's show we're speaking with Travis Mills. Travis, if you're not familiar with him by now is the quadruple amputee from an Afghanistan IED and we're going to hear more about his story in a little bit. And he also is running a foundation that provides R&R services more or less for other veterans that have been injured. Is that right Travis?

Travis 00:55

Yeah, absolutely it for physically injured and now we're moving towards all injuries.

Lita T 01:00

Great, great. Well, welcome to the show. Go ahead, Ron

Ron 01:05

Travis. Hi, this is Ron. Again. Thank you for joining us today on our show. First, I would like to start off by saying thank you for your service to our country.

Travis 01:15

Well, no, I appreciate it. Thank you so much. And I'm excited to be here. I'm looking forward to hanging out with you guys for a bit. Yeah!

Ron 01:21

I read a bit about your injuries and your recovery. I gotta say, I am amazed by your determination and your tenacity. It seems like you've overcome a lot of challenges since April of 2012. Could you tell our listeners a little bit about that day? didn't it just start off as a regular day for you.

Travis 01:41

You know, it did we were on our, you know, deployment. I was supposed to be there for nine months as my third deployment. And we had a phone call come in from the village elder that there was some IEDs we had a checkout. So we put our gear on like normal. We went on patrol and try to help them out. And we went, you know, the same routes that we always would take not the same routes, the same general direction. And I had the guy in front of me with the Minesweeper and swept the ground once again, twice like we are protocol. And it just didn't alarm that there's anything under the soil. So I happened to take my backpack off and I put it on the ground. And then the bomb went off. You know it. It shocked my world to be honest with you.

Lita T 02:19

Well that's For sure.

Jean 02:21

Yeah. I can't even imagine what you were going what was going through your mind at that time? Probably. Yeah, shock. What were the next steps after you were evacuated from the site where you were actually injured. For instance, how soon after the attack, were you transferred back stateside? And was there an intermediate location or two for immediate surgical repair?

Travis 02:40

Well, I mean, what they did was, like I hit, my arm right side was completely gone, my right leg was completely gone. They disintegrated and they're found those pieces of me my left leg was snapped to the bone actually. So if you imagine the left ankle bone touching the left thigh, and my left wrist was blown out pretty bad. I hit the ground and rolled over on my back and I saw the aftermath. And in my head, I kept seeing the movie, Saving Private Ryan. And I thought you know about the medic that gets shot stomachs and then he cries out for his mom and ultimately died. I had I said no way like that ever remember me to freaking out or complaining or crying or feeling awful, you know begging not to die basically. Because at the end of the day, it's not my choice and I'm always wanting to exude confidence never showed fear, I led from the front and you know, I just, you never do that as a leader. So I calmed myself down, my medic worked on one side of me my Platoon Sergeant worked on the other side of me, they got four tourniquets on and then I with my left hand that was still left on my body. I reached up and grabbed my microphone and I called my Lieutenant I said, Hey, 6 this is 4 I got guys injured. I need your medic with mine. two of my soldiers got hit. So I you know, I called them and they radio back they sent Doc Voyce over. And Doc Voyce came to work on me, we're working on you know, my other men, and then me. I had to kind of calm him down he was in, stuck on repeat, you know like an old CD we could skip start skipping, he was doing what his training taught him to do so I kept saying "You'll be fine Sgt Mills, you'll be Okay, You'll be fine Sgt Mills, you'll be Okay, he kept working he just kept saying it. I had to look at Doc Voyce and say "Hey Doc Just do your job. It's fine." And they got me on the helicopter about 10 minutes after Doc Voyce got there so really about 12 to 15 minutes being injured I was on a helicopter and I was transported to Kandahar hospital where I didn't know this then and I'm happy that it's, you know, a known fact now but 99% of patients that make it to Kandahar hospital leave Kandahar hospital alive.

Jean 04:36

That's amazing

Travis 04:36

And yeah, so they started wheeling me right into surgery as 14 hours of surgery took me into and just a wonderful team of nine doctors and seven nurses working for 14 hours straight to put me back to, well not put me back together I guess. that I was laying around with prosthetics but to you know, heal up my wounds and...

Lita T 04:56

Saved your life

Jean 04:57

Stabilize

Lita T 04:58

They saved your life, yeah,

Jean 04:59

yeah.

Travis 05:00

Yeah, absolutely.

Lita T 05:01

I'm guessing that those medics at the at the frontline are really the ones that saved your life. I know this wasn't something we were going to talk about, but do you stay in contact with those guys?

Travis 05:10

Oh, I do. Yeah, actually, um, you know, I know very fast forward but my wife and I had another child fortunately. So we have two now. And my son's name is DAX. Oh, he DAX is for medics, Daniel and Alexander as those who made it possible. Somebody will like name my kid in their honor. So that was great. My wife kind of came up with the idea of more than I was going for Travis Fieldyen Mills the second but she said no

Lita T 05:29

That's amazing (laughter)

Travis 05:39

I name everything after myself, my my business, my foundation, you know,

Lita T 05:44

At least everybody knows where they're going.

Jean 05:45

It worked for George Foreman, so why not?

Travis 05:48

Exactly.

Lita T 05:49

According to the Department of Defense, as of January 2018, more than 1500 service members have lost limbs in the wars in Afghanistan and Iraq, since all of this started in 2001, and an article back in 2018. In July, it pushed the number up to 1900 and 14. So 1914 Have you met any other amputees since you have been injured yourself?

Travis 06:21

Had I, you mean previously or since?

Lita T 06:23

no since then?

Travis 06:25

Oh, yes. At the hospital that we had a bunch of better, everybody at the hospital was an amputee

Lita T 06:30

Okay. Okay. So this is a very common wartime injury currently correct.

Travis 06:37

Oh, yeah. Yeah, but it's common to the hospital. So like, I had no idea like patient things like that. I mean, you figure you lose a leg, your life's over. Like it's gonna be the worst thing ever. And, you know, I got to the hospital and when I find it, they woke me up from a medical sedation. I was kind of like questioning why that person got hate me. What would I do wrong in life, talking to your husband and father and you know, the biggest thing I wonder is, why not just die? Like, how is this better? And in truth, I didn'twant to talk to my wife, my mom and dad at all that my parents didn't want to deal with the situation. But then I got to, you know, wake up, my brother in law was in the room, he was in the Military as well, a friend of mine, I met his sister, my wife, and my parents, my wife, and I did. And then I didn't really have a conversation with them. It's kind of like, I don't want to talk about this, I want to deal with it. But finally, I got to meet Todd Nicely. He was a quadruple amputee, I'm actually one of five, I'm the fourth one out of five of us, and he walked into my room was like, Hey, man, you're gonna be fine. You're gonna walk again, you're gonna drive again, you're going to feed yourself, you know, you do everything you need to do by yourself. And I know doesn't sound like it, but you're gonna be independent. And I'm sorry. And that was all the, you know, the motivation I needed.

Lita T 07:48

So they kind of turn you around you think?

Travis 07:51

You know, my wife, and I thought she should leave me. Turn me like okay, let's get better. I won't be a burden on anybody. I mean, I'm very demanding husband. Unfortunately, you know that I expect a lot of help things but I'm very lucky my wife stayed. My daughter was six months old when I got hit. So she was there more with me every day. And I actually learned how to walk with my daughter kind of cool. You know, little thing me and her have

Lita T 08:15

That's so cool

Travis 08:16

so and she's eight years old. She goes, and she tells people, you know, I taught my dad how to walk.

Lita T 08:22

So cool, I love that. Yeah, it's gonna be hard to not tear up right now.

Jean 08:27

Yeah, especially after watching the movie with the two of you,

Lita T 08:30

right?

Jean 08:31

Yeah, she was right there for your physical therapy and everything and your wife was right there too. And it's, that's amazing.

Travis 08:36

Oh, absolutely.

Lita T 08:38

After that. They got you back, you know, alive and somewhat functioning. Did they give you the chance to remain in the military in any status like you know, just state side desk side or do they just tell you this is it

Travis 08:53

you know, they did actually General Odierno and the Sergeant Major of the Army at the time came in Chandler came in talking to the hospital about, Hey, you know, we'd love to have you stay in, you can go around and maybe present on behalf of the military and I teared off and I said, Look, I plan on doing 20 years, gentlemen, but not like this. And my time has come to an end. I can't be Infantry anymore. I can't, you know, be airborne anymore. And as sad as it was to come to that realization, it was just, it was time. I think I made jokes and I really don't want to get restationed anywhere. And General Odierno said, I don't think we restation Sergeant Mills. I don't think so either, sir, but I'm going to call it today. I appreciate this conversation, you know, cuz it was emotional. I planned on 20 years at whole career path lined up, but it just didn't work out for me and that's okay. Cuz like, you know, it's gonna play some curveballs and you got to keep pushing forward and do the best you can and I feel like I've taken that curveball, and that's kind of knocked out of the park with everybody that helps.

Lita T 09:53

That's super

Ron 09:55

Travis, I've seen some of your videos on YouTube. Absolutely. Amazing. And I could tell you're a pretty humorous guy. How did your humor and your personality I guess, how did it help you with the recovery process? And how long after the amputations where you fitted for the prosthetic that you wear?

Travis 10:18

Well, the humor that I have came back right to me. I met in fact, one day, I was sitting there in my hospital bed, the hallway from the nurses, and I could see them holding their like change of shift brief and I started yelling, oh, my legs, my arms and legs where did they go? How did this happen? And I'm just joking to get their attention. And a little 10 year old walked by, and I was like, Oh, I'm just kidding. Sorry. Girls, like I'm so sorry. But, of course, you have the humor. And I think the best compliment and sometimes the worst compliment that I get is that I'm the same person that I was for the injury. So depending on who says it, you know, if you know somebody that's a friend of mine that grew up with says that's awesome, but if it's like a like a Maybe old school teacher from high school. Oh, sorry.

Ron 11:02

Yeah.

Travis 11:05

But as far as my prosthetic, I was able to get fitted after five weeks time, so a relatively short period. And then seven weeks and four days, I was able to start walking again so just shy of two months. I took my very first steps at Walter Reed. I mean, it was a short, legs a very different feel from walking, but I was starting my comeback,

Jean 11:24

right? It's amazingly fast.

Lita T 11:27

Amazing. For sure.

Travis 11:29

Well, I appreciate that. And then Believe it or not, I have no arms and legs like I do. I just made a video this morning. I was at the gym and I was actually running this morning at the gym. It's first time in two years. I took a hiatus because a no excuse, but back running now. So it's good.

Jean 11:45

That's awesone, that's absolutely awesome

Travis 11:47

Well yeah, I mean, I travel I travel the nation motivational speaker and I started every time off by saying I tell jokes disarm situation. Knee slapper if you got it, you know, don't have arms or and I also can't slap my knees. But I think it just makes people look past the injury that I sustained and more at the man that I am

Ron 11:47

. I say I'm work. I work in the disability community. I'm involved in Disabled Sports. And I tell you, it is a very interesting community with the humor so I understand exactly where you're coming from. You know who can say what? absolutely

Travis 12:22

happy, you know, because I want to break down barriers and walls and people are just at Whole Foods to be honest with you and a little boy walked up, he's like, "what happened to your arms?" His mom's like. "don't ask that" like don't ask that to know, I probably have people asking like, then stare and like, kind of shy away from it. So I told him I, you know, had that day at work. And now I'm like Iron Man with, you know, the superheroes. He's all about it. He followed me around for a little bit. So I was like, Hey, man, I really gotta go.

Jean 12:49

Oh, wow. So every day, you're just

Lita T 12:52

inspiring people,

Jean 12:53

inspiring people wherever you go. That's fantastic. And Travis, my mom and I both know that, you know The army is not only a community, it's kind of like a family. But apparently that's really the case for you. As you had said your brother in law is also in that in the military. And that's actually how you met your wife.

Travis 13:12

Oh, yeah.

Jean 13:13

And what role has that played in your recovery?

Travis 13:17

As far as military Brotherhood in my recovery, how's that? Okay, yeah. So at the hospital, I answered the military in general, you have a brotherhood, right? Like I didn't go on my third deployment. I was supposed to go to Fort Hood, Texas, and help build a per day up ticket timeout from the point that so much time but I had all these young guys that came from across the nation that believed in me, I said, Nope, it's not fair to them. They believe me, I'm their leader. My wife understood the calling there at her house with five kids and she knew I had to go. There is something ingrained in you as a servicemember. So I went overseas, and I got injured, right. So you go from the platoon size brotherhood and then you have the hospital without Todd Nicely coming to talk to me. Shortly after I was injured. I've never know the possibilities that lay the head. So I work properly as motivated when you get down to the military advanced training center, where all the injured guys are at and then we tell you something is just amazing. Because that's a tight knit group, and you're all working together and living together. going through the same thing with the with your spouse will do the same thing or children and having them to lean on. Plus, the staff at Walter Reed are just top notch physical therapists, occupational therapists, you know, in the driving of cyclists, the process everybody, it's just one well oiled machine, the doctors sorry and Walter Reed is a Brotherhood and having everybody that was injured. Like me, or you know, not like me with no arms legs, but like maybe missing the leg missing the arm, spinal cord injury, whatever. It was nice having them there because, you know, you feed off them, they still got the mentality of, you know, being in the service.

Lita T 14:54

Right. Could you please tell us a little bit about the prosthetics that you're using now. And an add on question, I guess. Do you start out like a person that has an amputation? Do they start out with one type of a prosthetic and move on to different ones as they get acclimated to the use? Are there like prosthetic training wheels of sorts?

Travis 15:16

Yeah, absolutely There are so we'll start with the hands the first one that I got called the mile electric I still use things that Dan that I have that but he only went for one hour a day and then it got progressively more and more so without I was on I want so like I've added on 20 hours or whatever, you know, up and up that long working or doing whatever. And they just, you know, it's muscle flex base. So I certain muscles blow it up into flex, but they muscle fat that rotate and download down fast. And it's pretty awesome because I mean, I could eat a sandwich, I can open the door, I could drive my truck, do everything I need to with that one hand that I wear on the left side, the right side. I'm so high up injured. I don't wear prosthetics on it. Unless I'm doing that. activities like downhill mountain biking, or kayaking, and things of that nature. Okay, snowboarding, I do all that stuff, which is pretty awesome, then. Oh yeah. And then as far as the prosthetic legs is definitely a training wheels type session where you start on short legs, so they mold your legs start on really short prosthetics and you got to rebuild everything from 250 pounds when I got injured to 140 pounds. I lost all my muscle mass. I couldn't roll right and left for sit up myself for a while there. So I had to regain all my core muscle and strength. And he started on shorter legs. So when you get stronger on those, it's basically like if you imagine where your kneecap is, there's a foot at the end of it for me it would have been difficult to deal with Sure, yeah. It and then you grow taller and taller to the point where you have straight legs that are like still so you're standing up as high as they're going to make you okay, I was six, three, almost six foot right now. I was you know, so they Currently, Sanchez Blitz offer safety and gravity and whatnot. And then they give you the legs I'm wearing now it's called x threes. And they're the top of the line. They're waterproof. They're Bluetooth, that have like a locking remote, much better angle. They have little computers in each leg. So they're microprocessors fitter. So every time I move over here and adjustments get made to keep me as upright as possible. And then the last thing is they have hydraulic brakes built in so when I go down the ramp, I can slow myself down. I find a lot of airplanes actually good motivational speaker. So when I go down on the jetway, I don't go bowling for people.

Ron 17:36

So yeah, that in the video too. Right, right. Yeah,

Jean 17:39

that's, that's incredible.

Ron 17:42

was funny. One of the other things in the video talked about your prosthetic hand and your daughter's future boyfriend. I thought that was pretty humorous.

Lita T 17:53

Yeah, tell us about that firsthand.

Travis 17:55

Yeah, I got it. Yeah, keeping a Crown Royal bag in my closet. It was 45 pressure, and then 35 pounds of pressure. And the reason I keep in the closet is because when she's 16 her mom lets her go on a date, I'm gonna bring the handout. I'll probably you know, crush his hand, when he's crying I'm going to tell him "no fingerprints". But don't mess with me, bro. Let him go

Lita T 18:15

(laughter)

Travis 18:15

To subdue any, you know,

Lita T 18:17

Questions that he might have had

Travis 18:18

Ideas he was thinking about trying? My wife says I'm not gonna be able to do that. But, you know, we'll see.

Lita T 18:19

Right right That's right, that's right

Travis 18:27

And high school buddies like real good friends of mine are so excited because their kids get old enough they can't wait to buy me into the same thing. I'm like, I'm coming let's throw a party. That boys to style like Bad Boys 2 with Martin Lawrence, and Will Smith the show that day.

Lita T 18:41

Sure, sure.

Ron 18:42

Yeah, that's too funny. You just mentioned your friends. It's actually leads me into my next question. Your friends and family, including your wife. how supportive as they put you through this little this journey.

Travis 18:58

Oh, I mean, stop that. I I definitely gain and lose friends through this and you know having my wife at my side every day was a reason I kept fighting to get better because she's not leaving me, then I gotta do my best to not be a burden. And you know a lot of places that she goes for other nonprofits maybe they bring up like, you know, the problems that have their husbands or issues they have their husbands. You know, some of the other spouses might say like, we can't do this because of that I felt like was Travis Travis Travis takes boys to gymnastics he runs around does grocery shopping when he when he can and things so I try to be everyday average normal husband, fathers, I can't be but then having you know, my friends, bear with me. And now with the foundation. I've been able to bring up a lot of really cool families that I want to help out. So we help all physically injured, sterilization spinal cord, service families and it's all free to them and it's all about Hey, get out out there be active in community and in your society, because some people aren't as open as me. And I think having support group that I had and having that I, I had to learn things like, like walking and stuff as I'm fortunately so successful in my everyday life.

Lita T 20:17

Sure, sure.

Ron 20:18

Oh, that's fantastic. That's fantastic.

Lita T 20:20

Definitely. Travis, what do you wish people knew about amputees? I know that you say that, you know, go ahead and ask That's for you personally. But what do you wish people would know about amputees? Like the emotional changes that a person goes to you? So like, in other words, if somebody wanted to ask a question, but they were afraid to ask, you know, pretend like you're asked, answering those questions. What What did you have to go through emotionally?

Jean 20:47

And I would say like, what, what do you wish they knew?

Lita T 20:50

Right?

Jean 20:50

Yeah.

Travis 20:51

Well, I mean, honestly, for me, a lot of my buddies that I know rather than have the conversation than the looks, the stairs, and like the The awkward, you know, oh crap, they're looking at me I'm going to look back, or up at the ceiling or whatever and look back when they're not looking. So, really people they want to be delicate, which I appreciate I understand but, you know, everybody that I know is everyday, regular person, they just had some mishap at work but didn't change them, you know, into being this person that needs to be, you know, you know, babied around or, or ostracized I guess. So, you know, for me, why don't people know is like, have the conversation say Hey, how's it going? People ask me. It's a funny thing. Like, hey, Travis, you know, when I see someone like you, What do I say? I'm like, I usually say hi or hello

Lita T 21:42

Exactly, exactly right, right

Travis 21:45

And, you know, also, I'm trying to change the narrative. I say I'm recalibrate because my voice those out you want those wounded guys, it doesn't feel very good, don't have any more injuries. I have scars. So I'm trying to change the whole life. Word wounded, is that the negative to recalibrated it right?

Lita T 22:03

Okay,

Travis 22:03

based off a little bit. We're good to go. It's good. And then then also, I think that the term veteran in general has become kind of like, oh, you're one of the veterans Do you got that, you know, pts or what's wrong and I'm like, nothing I serve my country had a great time doing it, love my job, had a bad day at work. I gotta move on. So, you know, my foundation, we're actually expanding our program to help people get back on their feet. That may be something for PTS, things like that. Because I really truly feel that you know, you need to get help to get out of your own way to be successful, I'm fortunate. We're going to talk about that I run I own part owner and two, and I run one with my wife. So three businesses plus nonprofit that's very successful.

Lita T 22:47

That's great.

Jean 22:48

Well, we weren't must be very busy.

Lita T 22:50

Yeah, I would say so. Yeah, well, yes, for sure. I'm getting back to the physical thing that you've been through. How many surgical procedures have have you had?

Travis 23:02

I think 13 they said they

23:06

Yeah, 13 surgical procedures, maybe more, but I didn't have any. I didn't have any surgeries. Kind of weeks easily get with me What's up, let's go internal. Then I had my eardrum repaired, which was the worst surgery that I can remember. But and then besides for that, nothing too crazy. I was very fortunate and lucky there no infections or anything like that.

Lita T 23:28

Do you think they'd be in the best physical condition that you were in prior to the injuries was what helped your recovery?

Travis 23:36

I think so. I think it did. For sure. I was a weightlifter. I picked anything up that was heavy and put it down. You know, one of those meat is kind of nice. But I also I think it was on the battlefield. The reason I didn't lose my blood out and everything. I remained calm. I didn't get my heart rate up. I didn't freak out. I kept telling myself whatever happens happens. Not my call at the end of the day. So don't freak out. And I think that might have saved my life as well because instead of yelling, I don't want to die and freaking out and panicking, I just like to stay calm and ride this one out. So very fortunate that I'm kind of stuffing it in the best way possible, which are my thing. And the most worst way. Yes. All my family members, maybe.

Jean 24:22

Well, yeah, that's, that is truly amazing. And it says a lot about who you are as a person who you were before, and who you who you have always been, and your injuries were in 2012. Do you still have like phantom limb pain? And is there anything that they can do to help treat that part of the injury?

Travis 24:39

You know, it's great question and I can't reiterate the documentary and I wish I could, because I say that the academy coma I don't think I would do it again, which is I only did that. You know, the documentary was five months after my injury. In truth, the phantom limb pain I would 110% not be the person I am Today if I didn't have the ketamine colon Academy coma, they're doing a case study. And what they did was reset my brain to think that my nerves and where they were blown off and finally beat. And I, I have been absolutely pain medication free since October of 2012. I quit it cold turkey, and no pain medication. No medication whatsoever, actually, which is very unfortunate, but because of my case study they did. It's more of a common use process. And I have no phantom limb pain, no pain to speak up. And I'm very, very lucky. I know that so it's, you know, that's one thing that at the time when I said it in the documentary, I didn't know the results of it and now looking back like it was probably the best thing for me because my life is obstructed by anything, I don't live, you know, any medication and just keep pushing forward with with a pretty worryfree life.

Lita T 25:58

It's amazing.

Jean 25:59

Yeah, that's awesome.

Ron 26:01

Try to watch the video that showed you and your modified truck. Oh, you know you still drive? What about any of your other recreational pursuits? Do you need adaptations? Or how do you how do you do done?

Travis 26:15

Well, you know, luckily with the remote to my truck, and I click My legs are better your angles I can drive my truck No, no no problem and therefore a lot of us like to get into get adapted. I just kind of drove it every day and made it work with a steering wheel handle so I can drive most anything but I have a van that has ankles in it, which is awesome. And that that really helps out a lot too. So it's just a lot of fun that I get to do that and be able to drive again and stuff so I i guess i have a ranger in a golf cart. But there's no adaptions on those. I just kind of drive those.

Jean 26:48

If you're going to be running that day. Is there do you switch out your prosthetics to make running

Travis 26:54

You know what? Yeah, yeah, so I did I forgot to cover that. I went back and training was walking to look at my profit. But in truth, I have bicycle legs I've never used I'm going to set them up one day very excited about this. I'm running late. I have both. I have worked out a little short workout legs. And then I have different hands and attachment. I mean, it's I have a bowling arm. I think I'm going to use this weekend. My daughter's birthday party thing she's doing with all their friends and their, you know, whatever. And I have a pool table arms. I can't wait to get a pool table. I'm telling you what,

Ron 27:26

(laughter)

Travis 27:27

kind of exciting but yeah, there's definitely different adaption,

Lita T 27:30

okay,

Travis 27:31

there are adaptations that they have. And it's kind of like it's weird, but like, just like on Amazon, you go and set the book. You're like, oh, that activity looks fun. And see if I get one of those. I have I have a like a 10 inch butcher knife. So I can carve a turkey to be honest. I haven't covered a lot of turkeys. But it's very sharp. And you got to be very careful on the walking thing because it's like running with scissors.

Lita T 27:52

Oh, yeah.

Travis 27:54

But yeah, we have all that stuff. And I'm so grateful that there's some geniuses and bright minds out there. That put this together to make it possible for

Lita T 28:01

for sure.

Ron 28:02

Well, Travis, if you don't already, if you don't do scuba diving or you haven't done archery and you are interested, let's talk later because I'm involved in both of those activities for people with disabilities.

Travis 28:17

I appreciate that. Yeah,

Ron 28:19

for what I've seen you do a lot, but I wanted to throw that out. There is another. I don't know something else you could add to the resume.

Lita T 28:26

Right, right.

Travis 28:27

Yeah, so I've done archery, and I'm okay with that. You know, it's not something again, knock knock on the arrow part gets me kinda. So like, my biggest stubbornness I have. If I can't do it by myself, then it's like, I don't really want to do it. So I'm getting some, some rifle setup so I can go, I like to skeet shoot you right. It's target shoot. But also, my next goal is already been skydiving a few times I show my airplanes but since I've been injured I've been skydiving twice, my next goal and here's where being you can can collaborate. I'm gonna go you know, cage diving with a great white sharks. I just I'm so afraid of sharks. I face my fears and I cannot wait to jump in that cage with those with sharks all around the but I want the big ones off this, you know the Cape of you know, of South Africa I want

Ron 29:14

certainly that. That's one of my bucket list items. I just say I don't want that to be the last item on my bucket list if you know what I mean

Lita T 29:20

(laughter) okay.

Jean 29:22

Yeah, you two have fun

Travis 29:23

You've got to live a little bit

Lita T 29:25

I'll be up on the boat with the spear gun and I'll be keeping an eye out for you.

Jean 29:30

Wow.

Travis 29:31

Yeah, drinking the rum punch. I love it

Lita T 29:35

Somebody getting on shotgun.

Jean 29:36

Yep.

Travis 29:37

Oh, I get it.

Jean 29:39

That's you guys are hilarious. But yeah, you guys don't have to work that out with Dive. Heart. Travis, what is the future of prosthetics look like and what do you hope to see with future prosthetic devices?

Travis 29:53

You know, the prosthetics are quite amazing. They have prosthetics that your hands that each finger moves instead of just Like the two fingers, like, you know, like he can add a little motor I'm looking for those get more durable, which is exciting, but also then hooking to like, your nerves and all that so that they can, you know, sense what your muscles would would actually be flexing to open your hand and close it. But I think also what I'm excited about a step further than prosthetics is they're doing stuff called osteo integration where they they're hollowing out your humor bone and hooking a rod to it and a rod inside your skin like your feet do. And then you connect your feet on it, and you can take them off. And then kind of lastly is the stem cell stuff, which is so intriguing to me because they're regrowing people's like one guy like regrew his thumb, so that they're saying they're probably able to regrow people's arms and legs in the near future. Like we're talking 5/10 years.

Lita T 30:47

Wow.

Travis 30:48

We're just I mean mind blowing, right?

Lita T 30:50

oh yeah wow,

Travis 30:51

yeah, I'm gonna be the first one to do it. But I'm saying it's just it's just amazing that the progression right when the first guy made a prosthetic Civil War thing or got started, because he lost his leg to a cannon, or infection or a gunshot, something to do with civil war. But now, I mean, bionic stuff is just impressive. So sky's the limit. If I was a Vietnam era veteran on the battlefield medicine or technology that we had have today, very rarely where a guy like me ever make it, very low percentage. And now, because of the wars and because of technology and the time that we live in, I live a pretty normal life. Like, I mean, you know, I, I went down and did a federal meeting today at a building that was like a day to day and I had I went to the gym and ran to the outdoors, the laces running at the gym. Pretty cool, right?

Lita T 31:41

Absolutely.

Jean 31:42

And very inspiring

Travis 31:44

And I think i think i think the big thing is, you know, to stay to stay humble, because I don't want to ask for too much. It's just so fortunate and lucky to have what's out there on the market right now.

Jean 31:55

Sure, sure. But I guess you know, as far as the future of prosthetics, the designer Definitely want to hear from the individuals who will be using them to see what is it that you guys need?

Travis 32:05

Oh, absolutely there for dreams for sure.

Ron 32:09

Travis older veterans day name require amputations due to medical complications, like diabetes, or something like that. Have you interacted with any of these older vets to talk with them and give them an idea of what to expect after amputation?

Travis 32:27

Well, I mean, I get it. I get some conversations, right? A lot of like, one on one counseling like that. But if I go to the VA to do a checkup or something, when I see somebody and ask the questions I answer or someone at the grocery store that, you know, I, you know, have the conversation. So a big thing is people emailing my website, and they'll ask me like, Hey, you know, I got this going on. I was thinking, maybe I should just cut my leg off. What do you think I'm like, I'm not the guy. Like, that's not my Yeah, my expertise, but I'll tell you, that, you know, there's different prothestics out there make your life better if that ends up being the diagnosis or what happened. So, I'll try to get as much information but I want to make it sound like oh, it's Rick, hack that thing off. Let's call it a day. Right? But um, as far as people that are suffering you know, I know people use my use my website TravisMills.org for a lot of inspiration. And they go on my Facebook, which is all like tagged SSG Travis, because when they go to my Facebook page or my Instagram they'll see fun videos of me and my wife children or or meet my buddy or things like that and then they can you know, they can find out Hey, life goes on. That's what this whole podcast about some happen. Keep pushing forward. And that's kind of the message that we always we always project I'm always speak about resiliency and about, you know, overcoming life's obstacles. And it's just, it's a lot of fun for me, so I'll have the conversation, but it's not something I do what I want to accomplish.

Lita T 33:54

Well, speaking of resiliency, you were obviously able to draw on an incredible Internal Strength just to survive that incident. Could you tell us more about your mantra of never give up? never quit? How did you come up with that? And can that work for everyone?

Travis 34:11

Absolutely. It can work for everybody in the way that I kind of started in the hole. Never go never quit was I was working out. I looked all skinny and sickly and their staff say Do you wanna take a break? And I said, I'm never gonna give up I'm never gonna quit. And you know when I say my wife on my side, my daughter being there helped me walk again. In my driving force. My parents my in laws. My father in law, I didn't really know him that well really, right. Like, we talked about the weather, a lot sports but lived near him or was nowhere near him. When I grew up. He moved in the hospital with me, we became really close friends now. I mean, we're best friends. We travel all over the nation together. But it's just it's ingrained in my head that you just keep pushing forward. You can't just let your situation that you're living in now the outcome of your life and let me just Like the military, I always strive for more promotions and higher rank and do better and things like that and the best time of my life. So, you know, I don't want to sit stagnant. You got to keep moving. And that's kind of how I got the slogan. And now I live by it because I know that there's no not one but two children that look up to me every day. And I need to make sure they know like, hey, look, if you fall down, you got to get back up and keep going forward.

Jean 35:24

It's once again, amazing,

Lita T 35:27

Hooah!

Ron 35:30

Could you tell us a little bit more about the movie a soldier's story?

Travis 35:34

Yeah. So this documentary was created because people in Texas saw my story on I think Fox News, one of the new stations, and they thought was pretty cool. And they realized quite early in our conversations to have go room to room and meet people like me and the people that came into the hospital, and they wanted to film and we decided, you know what, let's just go ahead and do a short documentary half hour long and then it turned into an hour long documentary and became a film that that was actually that was done and about seven days, maybe nine days of filming. Yeah, there's a lot of iPhone footage of that cotton edit from Kelsey phone, which was great. But they did reenact with some of the interviews and all that just like in nine days, so.

Lita T 36:16

Oh, yeah, I was, that was a heart wrenching. A heart wrenching movie. We watched it just before we started the interview. We wanted to make sure that we were in the right frame of mind, and I don't know if that helped. Oh,

Jean 36:29

yeah, it was all it was us in a box of tissue. Yeah, but there were a lot of smiles.

Lita T 36:34

Yeah, yeah, I knew how it ended so that was the only reason I said it's got a good ending.

Jean 36:38

Yeah,

Lita T 36:39

it's gonna be a good movie.

Jean 36:40

It's gonna work out it's gonna be okay.

Lita T 36:42

Yeah,

Travis 36:43

I know it kind of sad for the first half hour.

Lita T 36:45

Yeah, it was a it was a it was a rough beginning.

Travis 36:49

And then now I actually unfortunate where we have, or I guess I have a book "AS Tough As They Come" It's a New York Times bestseller. I have a book out, and it might be made into an actual motion. picture, which is exciting, but can't count your chickens before they hatch. So we're playing it day by day and see how it goes.

Lita T 37:07

Sure, sure. Can you tell our listeners about your family now? So you've got two children and how have you adapted to life together as and does this amputee getting away? I mean, are you just a husband and a dad?

Travis 37:26

I mean there's two answers to that I guess it didn't patient or my disability or you want to call it it does give away something like my daughter's in soccer. I'd love to be in the backyard keep the ball around and running. But I did that for the first year when she was like five cheaper soccer but now I can't keep up so I kind of watch her you know, from the side but doesn't really get in my way. I get on the trampoline with my kid but I still do a backflip we get into the floor the lake and swim around so don't really hold me up and I still do daddy daughter dances and things like that

Lita T 37:59

oh that's sweet

Travis 38:00

My wife, you know, she's unsung hero of everything. She doesn't like the limelight as much. But, you know, she's one keeps us all together the glue that holds it and she's been phenomenal. You know, she's taking my side and helped me out like today before we left, I still need help put my legs on. So she had to put my legs on, she doesn't complain about that she just, It's just normal now. So like, when I wake up, you know, my legs go on in my pants or whatever. But it doesn't hold me back from being a father or a parent. You know, I'm the one that takes your gymnastics, and my son and I wrestle around. This is a lot of fun. So I guess we have the same family dynamic that we were always going to have. You know, I'm, you know, active with the kids and my wife and I still do things as a family. It's just different because I'm not able to do as much sports stuff as I'd like to because I used to be very athletic.

Lita T 38:55

But at least you've been there. You know the tips. You know, you know what to tell you kids how to do it. You can train them, you can coach them, you can guide them, because you've already done it. And

Travis 39:08

absolutely, give me excuses. I'm not sure that excuses will work with me, like, really, really fully

Ron 39:19

add here and kind of in the same boat with you a little bit too old, so I can't keep up with my kid. But I've done it before I can talk with them. I can explain to them, but I certainly can't keep up with them. They're young. You know?

Travis 39:33

You're doing better than me, Ron I mean, I fell apart at 25 you know, I got two feet in the grave now. 32 years old. There you go.

Jean 39:40

I don't know if that's quite true

Ron 39:42

I finally heard that, finally caught it. Again, I know the humor in the community can be pretty pretty intense, huh?

Jean 39:50

Yeah, you guys. Yeah. quite quite the comedian there.

Lita T 39:53

I gotta close my mouth now,

Jean 39:55

yeah. Okay.

Ron 39:56

Yeah, hopefully we'll talk afterwards. There. You

Jean 40:01

Do you have any tips hints and helpful advice for our listeners, or someone who's recently had an amputation or waiting to have one or their family members?

Travis 40:10

For you, I don't just sit here with amputations. I'll tell you what I tell all the audiences I speak to. I travel with you know, all over the nation. The two things I leave won't get off stage since the two left crap where because, you know, I went from this athletic six foot three lift weights every day, big, stocky, strong guy to, you know, have no arms and legs, and everything. So the first thing I tell people is don't dwell in the past. I sit in hospital bed and close my eyes and hope we pray that this never happened. And think how I go back in time, how do I change this? And you know, it took what two three weeks then when I finally realized that it does me no good living in the past is never going to change anything. So instead of dwelling on it, I remember this 25 years I have arms and like they're phenomenal and I've had seven amazing times and then I also take it step further and tell people that you can't control your situation. But you can always control your attitude. So for me, my situation is I wake up every morning with no arms, no legs, right then that's how I am. But my attitude, I'm fortunate, my daughter, Chloe to run down with no, if I'm not already awake, I jumped my wheelchair, I throw my arm on, right, we go downstairs, and we have our breakfast. And then I'm able to go ahead and go about my day. So instead of letting my situation dictate how I feel, I just realized that hey, I'm so lucky to be here and so fortunate because I have a lot of guys that make it back home to their families, that I might as well have a great attitude about every day I get to be here because you know, they're no longer with us and their sacrifices so much bear in mind. And I think if you get by those two life life lessons that I've been, you know, that I've learned and I live by pretty, pretty positive, upbeat, average, you know, great day. Hi, everybody. Sorry about the great day

Jean 41:59

Yeah.

Lita T 42:00

good attitude

Jean 42:01

is wonderful.

Ron 42:03

Yeah, attitude is definitely a big factor. Travis, you do have quite the following of people. You want to give a plug for your book or your podcast?

Jean 42:13

I can't believe you also have a podcast Wow.

Travis 42:16

You know, I do but we're just getting it off the ground. We did a little a couple, you know, test episodes and pilots, but now we're going to go ahead and and change out the format to be great. And, you know, I'm really excited about that. So, yeah, if anybody gets bored and want to check it out, check out Travis mills.org. For otter Travis Mills needs and we'll just kind of go from there. Okay, there you go. That's, that's great. That's, that's that's wonderful. And we hope our listeners do check that out. We cannot thank you enough for joining our show today. It's been a pleasure having you on Yes, definitely. Yeah, absolutely appreciate you guys having me. I hope you guys have won frustrated day and excited to be a part of this. You know, this episode. Your phenomenal podcast here.

Lita T 43:01

Thank you Travis for joining our show. And I hope others can find strength by listening to your story because that's the goal of our podcast.

Jean 43:10

Yeah. And it's extremely inspiring,

Lita T 43:12

very

Travis 43:14

Thanks so much, much appreciated.

Lita T 43:15

You're welcome. If our listeners have any questions or comments related to today's show, they can contact us at podcast dx@yahoo.com do our website podcast dx calm and Facebook, Twitter, Pinterest or Instagram.

Jean 43:28

And if you have a moment to spare, please give us a review wherever you get your podcast. As always, keep in mind that this podcast is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified healthcare provider with a any questions you may have regarding a medical condition or treatment in before undertaking a new health care regime and never disregard professional medical advice or delay in seeking it because of something you've heard on this podcast

Lita T 43:49

till next week.

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We are welcoming back Myisha Malone-KING. As you may recall Myisha spoke with us in season 7 about Crohn's Disease and just last week about her daughter's severe asthma. Myisha is a passionate dedicated advocate she’s received proclamations from states for recognition of her advocacy and IBD awareness. Besides her challenges with Crohn's, she ended up catching COVID last year!!

Having Crohn’s doesn’t make you more likely to get exposed to the new coronavirus. But it may make you more likely to have a harder time with it if you do catch it.

Certain people are more likely to become very ill if they get COVID-19, the illness caused by the new coronavirus. That includes people who take medications that suppress, or weaken, their immune system.

Many things can lower your immunity, including chronic illness, recent surgery, or medication. Any of those things might apply to you. Some, but not all, Crohn’s drugs suppress your body’s immune response. So far, experts haven’t done any specific research on COVID-19 and people with Crohn’s.

Doctors are still learning about the new coronavirus. But there’s already some expert advice for people with inflammatory bowel diseases such as Crohn’s.

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As you may recall Myisha spoke with us in season 7 about Crohns Disease. Myisha is a passionate dedicated advocate she’s received proclamations from states for recognition of her advocacy and IBD awareness. Besides her challenges with Crohns, Myisha has a duaghter with severe asthma and is here today to discuss her daughters' journey.

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COVID is a rough disease no matter how you look at it, however COVID when you already have a rare disease? That has to be extra hard! Barby Ingle joins us once again to discuss the ramifications in these trying times.

To reach Barby you can email: Barby@InternationalPain.com

Barby Ingle, BSc Psyc, President, Editor-in-Chief
International Pain Foundation, iPain Living Magazine

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In this episode we will discuss Halloween Safety during COVID

Fall celebrations like Halloween and Harvest Day are fun times for children, who at one time could dress up in costumes, enjoy parties, and eat yummy treats.

These celebrations also provide a chance to give out healthy snacks, get physical activity, and focus on safety.

Check out these tips to help make the festivities fun and safe for trick-or-treaters and some ideas to replace typical parties during these uncommonly scary times.

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Jenny was diagnosed as a child with the rare diseases Familial Adenomatous Polyposis (FAP) and Short Bowel Syndrome. She lived with an ileostomy for 6 years before having it reversed into a straight pull thru. In her spare time, Jenny shares about life with rare disease on Life's a Polyp blog and Youtube channel. She raises funds for NORD FAP Research Fund through Life's a Polyp Shop and is writing a children's book about FAP. Jenny graduated with a Master's of Social Work and works with individuals with chronic illness.

Short bowel syndrome is a group of problems related to poor absorption of nutrients. Short bowel syndrome typically occurs in people who have

had at least half of their small intestine removed and sometimes all or part of their large intestine removed
significant damage of the small intestine
poor motility, or movement, inside the intestines

Short bowel syndrome may be mild, moderate, or severe, depending on how well the small intestine is working.

People with short bowel syndrome cannot absorb enough water, vitamins, minerals, protein, fat, calories, and other nutrients from food. What nutrients the small intestine has trouble absorbing depends on which section of the small intestine has been damaged or removed. (Credits NIH)

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COVID is real, and we believe in getting as much information to our listeners as possible. If Marci can help, it's a good day for folks suffering the after effects of COVID!

As always, check with your doctor first.

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"The Desire to Serve, The Ability to Perform, The Courage to Act"

Nicholas Palczer host of the new podcast: Bottom Line Nursing! He has his Bachelors in Nursing, Associates in Nursing, & Associates in Fire Science

He is currently an Active Duty Air Force Nurse, which he has been for 9 years and was an Enlisted Firefighter/EMT before he got commissioned! He has been stationed at overseas and stateside assignments.

He is a Paramedic candidate and a BLS/ALS Instructor.

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Dr. Mafee is dual board certified in Neurology and Integrative Medicine. As such, she is passionate about using functional and integrative philosophies to prevent & reverse a host of chronic conditions. Dr. Mafee is particularly focused on helping patients work through neurodegenerative disorders. Dr. Mafee joined the Case Integrative Health team in March 2020.

Neurodegenerative disease is an umbrella term for a range of conditions which primarily affect the neurons in the human brain.

Neurons are the building blocks of the nervous system which includes the brain and spinal cord. Neurons normally don’t reproduce or replace themselves, so when they become damaged or die they cannot be replaced by the body. Examples of neurodegenerative diseases include Parkinson’s, Alzheimer’s, and Huntington’s disease.

Neurodegenerative diseases are incurable and debilitating conditions that result in progressive degeneration and / or death of nerve cells. This causes problems with movement (called ataxias), or mental functioning (called dementias).

Dementias are responsible for the greatest burden of neurodegenerative diseases, with Alzheimer’s representing approximately 60-70% of dementia cases. (Credits: JPND)

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This week we have the pleasure of speaking once again with Lauren Ryan. She joined our show previously and was more than happy to join us again to discuss a dizzying diagnosis: VERTIGO!

Vertigo is a symptom, rather than a condition itself. It's the sensation that you, or the environment around you, is moving or spinning.

This feeling may be barely noticeable, or it may be so severe that you find it difficult to keep your balance and do everyday tasks.

Attacks of vertigo can develop suddenly and last for a few seconds, or they may last much longer. If you have severe vertigo, your symptoms may be constant and last for several days, making normal life very difficult.

Other symptoms associated with vertigo may include:

loss of balance – which can make it difficult to stand or walk
feeling sick or being sick
dizziness

Vertigo is commonly caused by a problem with the way balance works in the inner ear, although it can also be caused by problems in certain parts of the brain.

Causes of vertigo may include:

benign paroxysmal positional vertigo (BPPV) – where certain head movements trigger vertigo
migraines – severe headaches
labyrinthitis – an inner ear infection
vestibular neuronitis – inflammation of the vestibular nerve, which runs into the inner ear and sends messages to the brain that help to control balance

Depending on the condition causing vertigo, you may experience additional symptoms, such as a high temperature, ringing in your ears (tinnitus) and hearing loss.

How is vertigo treated? Some cases of vertigo improve over time, without treatment. However, some people have repeated episodes for many months, or even years, such as those with Ménière's disease.

There are specific treatments for some causes of vertigo. A series of simple head movements (known as the Epley manoeuvre) is used to treat BPPV.

Medicines, such as prochlorperazine and some antihistamines, can help in the early stages or most cases of vertigo.

Many people with vertigo also benefit from vestibular rehabilitation training (VRT), which is a series of exercises for people with dizziness and balance problems.

Self care Depending on what's causing your vertigo, there may be things you can do yourself to help relieve your symptoms. Your GP or the specialist treating you may advise you to:

do simple exercises to correct your symptoms
sleep with your head slightly raised on two or more pillows
get up slowly when getting out of bed and sit on the edge of the bed for a minute or so before standing
avoid bending down to pick up items
avoid extending your neck – for example, while reaching up to a high shelf
move your head carefully and slowly during daily activities
do exercises that trigger your vertigo, so your brain gets used to it and reduces the symptoms (do these only after making sure you won't fall, and have support if needed)

(Credits...Scotland Natl.Health Info. System)

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Our guest on todays show is Elizabeth "Liz" Coy. She is a full time Business Development Executive, and now also a caregiver for her dad who has developed Parkinson's.

People with Parkinson’s disease rely on caregivers for a wide range of support — from driving them to doctors’ appointments to helping them get dressed. As the disease progresses, dependence on caregivers increases substantially.

Caregivers can help people with Parkinson’s adjust to the disease’s effects on the body. And knowing that a loved one is cared for can help the entire family adjust to the diagnosis.

But the person with Parkinson’s disease isn’t the only one who should be cared for.

Caregivers must take care of themselves too. Being a caregiver can be a complicated — as well as a physically and emotionally draining — experience.

Here are 12 ways to handle your role as a caregiver without neglecting your own well-being.

Educate yourself

As caregiver, it’s important for you to become familiar with all aspects of the disease. This will ensure better care for the patient and easier transitions for you as the disease progresses.

It will take time and continual effort for you to learn about the many varied Parkinson’s symptoms and how to manage them. As time goes on, you will also need to learn about medication regimens, which can be complex.

Several organizations, including The National Alliance for Caregiving and the Family Caregiver Alliance, provide assistance and care specifically to caregivers. These caregiver support groups offer:

education seminars
enrichment resources
connections to other individuals in similar situations
Prepare

Parkinson’s disease begins very slowly. It typically starts with a small tremor in one hand or difficulty walking or moving. Because of this, the role of caregiving is often thrust on a person with very little warning or a chance for preparation.

But once the diagnosis is made, you will lessen future stress by preparing now for the road ahead. Much of the work can wait, but you will want to start thinking now about the basics, such as:

Who will do food shopping and prepare meals?
How will medications be stored and administered?
What will have to change in the home setup to keep things safe and easy?

Of course, everything doesn’t have to change at once. And your loved one can probably share in a lot of it in the beginning. Talk with your doctors and other medical professionals about when and how much to restructure your lives.

As your loved one’s Parkinson’s progresses, their mental abilities will likely diminish. They will be less able to make decisions and plan.

At that point, prioritizing planning ahead will help both of you. Using an app may be helpful to make daily schedules as well as reminders for appointments, visitors, and special occasions.

Be involved

When a loved one is diagnosed with Parkinson’s disease, treatment for the disease should begin almost immediately. This is a time of major change not only for the person with Parkinson’s but also for you, the caregiver.

Doctors strongly encourage caregivers to attend doctors’ appointments. Your input may help your doctor understand:

how the disease is progressing
how the treatments are working
what side effects are occurring

As Parkinson’s disease progresses, dementia may make the patient’s memory worse. By going to the appointment, you can help remind your loved one of what the doctor said or instructed. Your role during this time is especially important to the treatment plan.

4. Establish a team

Many family members, friends, and neighbors will be happy to help if you need to run errands or just take a break. Keep a handy list of people you can call on occasionally when you need help.

Next, designate which people are the best to call on for specific situations. Some people may be more helpful with certain tasks, like grocery shopping, mailing packages, or picking up children from school.

5. Develop a support group

Caring for a loved one can be deeply satisfying. It’s a chance for your family to draw together as you face the challenges of Parkinson’s disease head-on.

However, providing emotional and physical care for someone with an illness can become stressful and, at times, overwhelming. Balancing your personal life with caregiving can be difficult. Many caregivers will face periods of feeling guilty, angry, and abandoned.

Of course, you don’t have to experience this alone. Support from other family members or professionals can help:

relieve stress
reevaluate approaches to treatment
offer new perspective on the caregiving relationship

Ask your doctor or your local hospital’s health outreach office for contact information for a Parkinson’s disease caregiving group. The person you’re caring for will likely also benefit from being part of a support group.

Support groups allow for open communication with other people facing the same struggles. These groups also provide an opportunity to share suggestions, ideas, and tips among the group members.

HEALTHLINE RESOURCE

TRANSFORM: Health Equity

71% of people agree that underrepresented communities in the US face greater hardships in accessing healthcare. Learn how they’ve been affected, and how you can help, today.

LEARN MORE

Seek professional assistance

Especially in the latter stages of Parkinson’s disease, caring for your loved one may become more difficult. When this happens, you may need to seek professional care from a care facility or organization.

Certain symptoms and side effects of Parkinson’s disease may be best treated with professional assistance or home health nurses, or in a nursing home environment. These symptoms and side effects may include:

difficulty walking or balancing
dementia
hallucinations
severe depression
Hire outside help if you need it

At some point, you may feel that both you and your support network are stretched thin. You’re tired, and you don’t feel comfortable asking friends and family to pick up the slack.

But the yard really needs upkeep. And the house isn’t as clean as it should be. And suddenly, it seems, you’re totally out of food, as well as the energy to go grocery shopping.

Hiring a gardener, a house cleaner, or a grocery delivery service can help if this is an option for you. Your physical well-being will thank you for it.

Build a good relationship

Caring for a loved one with Parkinson’s can place a great deal of stress on your relationship. A person you love is changing both physically and mentally, and both of you are needing to adapt.

The Michael J. Fox Foundation recommends keeping communication as open as possible and being flexible with your changing roles. Be aware that some changes, such as new apathy or irritability, is not directed personally at you.

If both you and your loved one are willing, consider consulting a therapist together. You can work through any of the anger, denial, or upset you are feeling, and find ways to keep your relationship healthy and loving.

Manage your stress

As caregiver, you are going to feel stress. You may feel fear, anger, helplessness, and more as you meet new challenges every day.

It’s important for you to know what triggers your stress and develop practices to manage your emotions and release them effectively. Journal writing, going for a walk, or calling a friend can all help.

Other coping skills might include:

Do something you enjoy. Tend the garden, talk to a neighbor, or read a book. Take at least a few minutes every day to enjoy yourself.
Try deep breathing. Even spending 1 minute taking 10 or so deep breaths can give your mind a rest and your energy a boost.
Get a massage. Getting a massage can release stress and give you the much-needed sense of being cared for.
Try a TV show. It’s OK. Be a couch potato for a half-hour or so. Watch your favorite TV show. It may help distract you from difficulties.
Exercise. This is one of the best stress-busters there is. Make time for it and find one you enjoy.
Be realistic

As a Parkinson’s caregiver, it is sometimes hard to remain rooted in the here and now.

In one moment, you might harbor hope that your loved one will somehow miraculously return to normal and be themselves again. In the next moment, you might think differently.

These are the times to take a few deep breaths and focus on how things truly are in this moment. Ungrounded fears and hopes can distract you from carrying on with life as it is.

If you need it, professional help can teach you tools and tips for how to do this. Mindfulness training, talk therapy, and meditation are all avenues you might explore.

Pay attention

The Parkinson’s Foundation points out that part of caring for your own mental and emotional well-being comes from noticing and understanding the changes both you and your loved one are experiencing.

The physical abilities of your loved one will change over time — and sometimes very suddenly. It is up to you to notice the change since they may not. By paying attention to these changes and managing them, you can make the road ahead easier for both of you.

You also have to keep a close eye on your own changes. ResearchTrusted Source shows that Parkinson’s caregivers frequently experience depression and anxiety, and their quality of sleep often diminishes.

Care for the caregiver

Whether you’re a spouse, parent, child, or friend, your role as a caregiver is to be on call 24/7. You’ll likely feel as if your entire world revolves around your loved one, while your personal life takes a backseat.

ResearchTrusted Source shows that caregiver burden is high among Parkinson’s caregivers, who likely face emotional, social, physical, and financial challenges as a result.

As the demands of caring for a loved one increase, many caregivers neglect their own health. It’s important to be proactive and take care of yourself. Keep current with your own medical appointments and healthcare needs.

Other things you can do to stay in shape include:

eat a balanced diet
exercise regularly
get proper sleep
schedule social activities for yourself
get temporary respite care when you need it

Takeaway

Caregiving for someone you love who has Parkinson’s is a major undertaking that can bring changes and challenges to every aspect of your life.

You will likely face emotional and physical hurdles, but also joy and the pleasure of helping someone you love. A brief prescription for succeeding as a caregiver includes:

educating yourself
asking for help when you need it
taking care of yourself

Don’t be shy about asking your medical providers, caregiving organizations, friends, and family for help. You need to do everything you can not only to help your loved one, but to also keep yourself healthy and positive as well. (credits to Healthline)

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Our guest today will be speaking about processed food addictions. Dr. Ifland has been creating breakthroughs in recovery from food addiction from 1999 with her first popular book to 2018 when her textbook, Processed Food Addiction: Foundations, Assessment, and Recovery was released by CRC Press.

Dr. Ifland is the lead author of the first scholarly description of processed food addiction and definition of addictive foods.

Social Media links:

Website - https://www.processedfoodaddiction.com/

Facebook - https://www.facebook.com/groups/1806154526275515

Twitter - https://twitter.com/JoanIfland

Instagram - https://www.instagram.com/foodaddictionreset/

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Our guest this week is Tarita Davenock, M.A. CTC
CEO, Travel for All Inc.

Tarita has built a reputation as a global expert in the field of accessible travel, and inclusive tourism.

A speaker and contributor to the Hungton Post, and other travel publications she is sought after for her extensive business knowledge as an entrepreneur with a disability and is passionate about creating access for all.

Tarita has served in a diverse range of roles over the years in promoting greater accessibility including remaining Vice Chair the Accessible Tourism Committee for the Standards Council of Canada and is a member of Destination Canada’s Advisory Board and she accepted a Board nomination for the Social Planning & Research Council in 2018 and serves on the Board's Finance and Audit Committee and the Board's Governance Committee.

Tarita has graduate degrees in English and Behavioral Psychology and is currently working on the completion of her Doctoral Thesis.

Prior to her diagnosis of Multiple Sclerosis, her career was Social Work, specializing in helping children and adults with Developmental Disabilities.

She remains a resource for many countries who are striving at creating a presence in this travel demographic.

Her company is one that creates a Social Impact and is known as global leaders in accessible, diverse and inclusive travel hps://travel-for-all.com/

Invitations for speaking at prestigious events in Dubai, USA, the Caribbean and Canada; representing the largest under-serviced tourism market.

Her passion for creating inclusion, diversity and support for people with disabilities continues to drive her in establishing opportunities at creating a better world.

Travel for All knows accessible travel is tough, but believes having a family member with alternative travel needs should not exclude anyone from traveling. With that being said, you may need to spend a little extra time planning to ensure you have the trip of a lifetime.

The Accessibility Specialists at Travel for All know how to turn your travel dreams into reality. Our specialists know that our clients need someone who will pay close attention to all of the details for them. They have traveled with their own disabilities, so they understand firsthand what you need, plus they have the connections to make it happen.

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According to the World Health Organization there are approximately 650,000 new cases of oral cancer each year world wide.

Oral cancer includes cancers of the mouth and the back of the throat. Oral cancers develop on the tongue, the tissue lining the mouth and gums, under the tongue, at the base of the tongue, and the area of the throat at the back of the mouth.

Oral cancer accounts for roughly three percent of all cancers diagnosed annually in the United States, or about 53,000 new cases each year.

Oral cancer most often occurs in people over the age of 40 and affects more than twice as many men as women. Most oral cancers are related to tobacco use, alcohol use (or both), or infection by the human papilloma virus (HPV). (credits)

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GBS bacteria can cause many types of infections:

Bacteremia (bloodstream infection) and sepsis (the body’s extreme response to an infection)
Bone and joint infections
Meningitis (infection of the tissue covering the brain and spinal cord)
Pneumonia (lung infection)
Skin and soft-tissue infections

GBS most commonly causes bacteremia, sepsis, pneumonia, and meningitis in newborns. It is very uncommon for GBS to cause meningitis in adults. (CDC)

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Dentures are removable appliances that can replace missing teeth and help restore your smile. If you’ve lost all of your natural teeth, whether from gum disease, tooth decay or injury, replacing missing teeth will benefit your appearance and your health. That’s because dentures make it easier to eat and speak better than you could without teeth—things that people often take for granted.

When you lose all of your teeth, facial muscles can sag, making you look older. Dentures can help fill out the appearance of your face and profile. They can be made to closely resemble your natural teeth so that your appearance does not change much. Dentures may even improve the look of your smile.

Types of dentures: * Conventional. This full removable denture is made and placed in your mouth after the remaining teeth are removed and tissues have healed, which may take several months. * Immediate. This removable denture is inserted on the same day that the remaining teeth are removed. Your dentist will take measurements and make models of your jaw during a preliminary visit. You don’t have to be without teeth during the healing period, but may need to have the denture relined or remade after your jaw has healed. * Overdenture. Sometimes some of your teeth can be saved to preserve your jawbone and provide stability and support for the denture. An overdenture fits over a small number of remaining natural teeth after they have been prepared by your dentist. Implants can serve the same function, too.

New dentures may feel awkward for a few weeks until you become accustomed to them. The dentures may feel loose while the muscles of your cheek and tongue learn to keep them in place. It is not unusual to experience minor irritation or soreness. You may find that saliva flow temporarily increases. As your mouth becomes accustomed to the dentures, these problems should go away. Follow-up appointments with the dentist are generally needed after a denture is inserted so the fit can be checked and adjusted. If any problem persists, particularly irritation or soreness, be sure to consult your dentist.

Even if you wear full dentures, you still have to practice good dental hygiene. Brush your gums, tongue and roof of your mouth every morning with a soft-bristled brush before you insert your dentures to stimulate circulation in your tissues and help remove plaque.

Like your teeth, your dentures should be brushed daily to remove food particles and plaque. Brushing also can help keep the teeth from staining. * Rinse your dentures before brushing to remove any loose food or debris. * Use a soft bristle toothbrush and a non-abrasive cleanser to gently brush all the surfaces of the dentures so they don't get scratched. * When brushing, clean your mouth thoroughly—including your gums, cheeks, roof of your mouth and tongue to remove any plaque. This can help reduce the risk of oral irritation and bad breath. * When you’re not wearing your dentures, put them in a safe place covered in water to keep them from warping. * Occasionally, denture wearers may use adhesives. Adhesives come in many forms: creams, powders, pads/wafers, strips or liquids. If you use one of these products, read the instructions, and use them exactly as directed. Your dentist can recommend appropriate cleansers and adhesives; look for products with the ADA Seal of Acceptance. Products with the ADA Seal have been evaluated for safety and effectiveness.

If you have any questions about your dentures, or if they stop fitting well or become damaged, contact your dentist. Be sure to schedule regular dental checkups, too. The dentist will examine your mouth to see if your dentures continue to fit properly. (ADA)

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Cannabidiol (CBD) oils are low tetrahydrocannabinol products derived from Cannabis sativa that have become very popular over the past few years. Patients report relief for a variety of conditions, particularly pain, without the intoxicating adverse effects of medical marijuana.(NIH)

On todays show we are speaking with the Dynamic Duo at CannaPros inc. about the various Cannabis products typically used in healthcare. Danny J Gallo (Klimczak) Founder & Alex Krupa COO of www.CannaProsDistribution.com have a wealth of knowledge and are eager to educate the masses on this valuable plant!

We are super excited to be posting our first video interview with this episode as well!! Tell us what you think about it so we know if we are heading in the right direction here!

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Shingles is a painful rash that develops on one side of the face or body. The rash consists of blisters that typically scab over in 7 to 10 days and fully clears up within 2 to 4 weeks.

Before the rash appears, people often have pain, itching, or tingling in the area where it will develop. This may happen several days before the rash appears.

Most commonly, the rash occurs in a single stripe around either the left or the right side of the body. In other cases, the rash occurs on one side of the face. Shingles on the face can affect the eye and cause vision loss. In rare cases (usually in people with weakened immune systems), the rash may be more widespread on the body and look similar to a chickenpox rash.

Other symptoms of shingles can include

Fever
Headache
Chills
Upset stomach

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Squeeze a world of passion, goal driven problem solver and an adventurous triathlete into 5 feet of fun and you get Faith Louise Cooper.

Facebook: https://www.facebook.com/cooperfa/. Faith Louise Cooper

Instrgram: https://www.instagram.com/speakingoftri/. Speakingoftri

LinkIn: www.linkedin.com/in/faith-cooper Faith Louise Cooper

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The Ehlers-Danlos Syndromes (EDS) give rise to a spectrum of features affecting the mouth that may lessen quality of life. Additionally, routine dental care has the potential to be compromised as a consequence of some of the systemic features of the disease. This episode provides a review of the oral and dental aspects of EDS.

Orofacial manifestations The oral and facial features of EDS vary with each type of disease. There have been few detailed studies of the orofacial manifestations of the rare and/or recently described types of EDS. In general the greater the laxity of the skin and mucosa the more likely that someone will have orofacial features. Similarly, the haemorrhagic types are more likely than others to give rise to gingival (gum) bleeding. (EDS.ORG)

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Congenital cytomegalovirus (congenital CMV) is a group of symptoms that may occur when an infant is infected with the cytomegalovirus before birth. Most infants who are infected with the virus never develop symptoms of the condition. However, approximately 10% of babies will experience health problems and/or disabilities such as problems with the lungs, liver and/or spleen at birth; hearing loss; vision loss; intellectual disability; seizures; small head size; and/or lack of coordination. Some babies with the condition may have evidence of infection at birth, while others may not develop symptoms for two or more years. Congenital CMV occurs when a mother is infected with cytomegalovirus during pregnancy and passes the infection to the fetus through the placenta. Treatment is based on the signs and symptoms present in each person (Rare.org)

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On average men die almost 5 years earlier than women! Why?

Stress and cardiac health have a direct connection, how does this affect men?

The mind and mental health status for men has a direct correlation to their heart health! Want to know more? Listen to this week's episode!!

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This week's episode discusses a rare condition that turns bone into fibrous tissue. Fibrous Dysplasia can be devastating, but our guest, Brittany is taking it all in stride and is continuing her advocacy work with us by sharing her story. Without further ado...here's Brittany!

I am a 36 year old woman from Indiana. I have a rare disease called Fibrous Dysplasia. It turns my bones into fibrous tissue. There is no cure and surgery is our only form of treatment. I have had 12 surgeries so far. At 13, I had to get a tooth pulled and after a few months an uncle of mine noticed the swelling from the extraction never went down. I then had a biopsy confirming FD. The following couple of years I started to experience debilitating headaches that led to a brain tumor being found and my bone disease was actually the reason for it forming. Surgeries started immediately after that diagnosis. The disease can cause deformity with our bones being able to grow at anytime for the rest of our lives including tumors and cysts as well. I have it in my face so of course my face changed quite a bit since I was a teenager. It was very hard to accept how things could change at anytime and took me about 20 years but I now see all those scars and growths as my uniqueness, my beauty. I wish I knew in the beginning how much I could gain from accepting myself and my flaws. Pain also took over my life for a good 20 years and was hard to accept the fact that I would live with this pain every single day for the rest of my life. That also took 20 years and I chose to finally stop just surviving and to start living as well. So now I use my pain as my push to advocate. It allows me to use my pain in such a beautiful way. It all has made me who I am and the worst parts are also all a part of my story and something that gives me so much strength and courage. Due to my disease I also lost all my teeth 5 years ago and it took a great toll on me. I am use to deformities and changes but not for having no teeth. Because of financial conditions i still do not have any teeth but i try each day to find help in getting new and to keep living happily despite it all. It also has became a part of my journey.

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On this week's show we are speaking with Kristine Hoestermann, the founder of "FindYourRare" and she will be explaining how she was diagnosed with HEDS and where that diagnosis took her!

Heeeeere's Kristine!

🆗More about the RARE. Girl behind the brand;

🥄I am a fierce lover of Grey’s Anatomy. Meredith Grey is my person.

🥄You can be sure that I’ll be either listening to Taylor Swift or True Crime.

🥄My favorite book is a Thesaurus

🥄I am a loyal Ticondaroga Pencil user

🥄I love to create & I am a huge nerd

🥄My Wardrobe can easily be mistaken for your grandmas & I love it

Change Starts Here. Connect With RARE.™

📱Share With Us 🔛@findyour rare on all social platforms #findyourrare

🛍 Shop your purpose 🔛 www.findyourrare.com

🎙 Because We Are Strong Podcast 🔛 www.bwspod.com

🗳 VPR Membership Club 🔛 findyourrare.info/vrp

✉️ Reach Out 🔛 info@findyourrare.com

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Food allergy is an immune system reaction that occurs soon after eating a certain food. Even a tiny amount of the allergy-causing food can trigger signs and symptoms such as digestive problems, hives or swollen airways. In some people, a food allergy can cause severe symptoms or even a life-threatening reaction known as anaphylaxis.

Food allergy affects an estimated 6 to 8 percent of children under age 3 and up to 3 percent of adults. While there's no cure, some children outgrow their food allergy as they get older.

It's easy to confuse a food allergy with a much more common reaction known as food intolerance. While bothersome, food intolerance is a less serious condition that does not involve the immune system. (credits to MAYO Clinic)

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This week we will be discussing stroke awareness.

More than 800,000 strokes happen each year in the United States. Stroke is the fifth leading cause of death in the U.S. and is a major cause of serious disability for adults.

A stroke is caused by blocked blood flow to the brain and can affect a person’s speech, movement, memory, and more. It’s important to know the signs of a stroke and get help quickly. Some of the warning signs include:

Weakness in the face, arm, or leg
Difficulty speaking
Vision loss
Dizziness
Brief loss of consciousness

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Dr. Eugenie Hsu is a clinical psychologist by profession and lives in the San Francisco Bay Area with her husband and two children. In 2011 when her son was 8, he was diagnosed and treated for a craniopharyngioma brain tumor: Grateful for his survival but distressed by the many challenges he suffered in the aftermath of the tumor and surgery, Eugenie became focused upon finding solutions and treatments to improve his and other survivors’ quality of life.

[One particular condition, hypothalamic obesity, was especially daunting and she was compelled to figure out a treatment for this difficult-to-treat condition. In 2016, she conducted an experimental treatment on her son using the neurohormone, oxytocin; subsequently, she chronicled their experiences in a widely-read blog (Hope for HO) and the successful treatment resulted in her publishing a case report in the Journal of Clinical Endocrinology and Metabolism.]

Last year, Eugenie joined the board of directors at the Raymond A. Wood Foundation, a patient advocacy organization for hypothalamic and pituitary brain tumor survivors. Eugenie lives by her belief that patient and caregiver advocates can advance science and innovations to improve patients’ health and quality of life.

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Brandi McAlexander was born and raised in Kirtland, New Mexico, a small town ten miles from the Navajo Native American Reservation. She is both Oglala Sioux and White Stick Creek.

She is happily married to a veteran of two tours to Iraq. Together they have a happy full house with seven children; four girls and three boys.

She worked in healthcare as a C-Suite executive for twenty years before deciding to change careers to a Juris doctorate. After receiving her JD in 2019 she opened up her own business "Pass the baby bar". Dedicating her time providing free education to college students pursuing a law degree. As of 2021, she has helped over 200 first year law school students.

Halfway through law school she noticed a major loss of energy and began to believe she had a health issue. After years of tests, false diagnoses and untreated discomfort she was able to confirm the true culprit. During the Covid pandemic in 2020 through a genetic test, she received a confirmed diagnosis of Fabry’s Disease; having inherited both the x and y chromosomes.

https://www.facebook.com/groups/110081906297349

Brandi M. | LinkedIn

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Today, we have with us today, Sheila Ames a registered nurse in Northern California who has been diagnosed with a rare type of a primary immunodeficiency known as common variable immunodeficiency or CVID for short. At the time of her diagnosis she was working as an ICU nurse and her first doctors order was: no more exposure to infectious patients. This diagnosis not only changed her career dramatically, it led her to following her life's purpose in opening her own health & wellness online coaching business to help others continue to find and work towards their life's purpose despite the hurdles that life gives us.

Causes CVID is caused by a variety of different genetic abnormalities that result in a defect in the capability of immune cells to produce normal amounts of all types of antibodies. Only a few of these defects have been identified, and the cause of most cases of CVID is unknown. Many people with CVID carry a DNA variation called a polymorphism in a gene known as TACI. However, while this genetic abnormality confers increased risk of developing CVID, it alone is not capable of causing CVID.

Symptoms & Diagnosis People with CVID may experience frequent bacterial and viral infections of the upper airway, sinuses, and lungs. Acute lung infections can cause pneumonia, and long-term lung infections may cause a chronic form of bronchitis known as bronchiectasis, which is characterized by thickened airway walls colonized by bacteria.

Doctors can diagnose CVID by weighing factors including infection history, digestive symptoms, lab tests showing very low immunoglobulin levels, and low antibody responses to immunization.

Treatment CVID is treated with intravenous immunoglobulin infusions or subcutaneous (under the skin) immunoglobulin injection to partially restore immunoglobulin levels. The immunoglobulin given by either method provides antibodies from the blood of healthy donors. The frequent bacterial infections experienced by people with CVID are treated with antibiotics. Other problems caused by CVID may require additional, tailored treatments.

To learn more about CVID, visit the National Library of Medicine, Genetics Home Reference CVID site (Credits to NIH)

If you would like to reach out to our guest:

Sheila Ames BSN, RN, PHN

Holistic Health Coach

Business FB page: https://www.facebook.com/JourneyIntoWellness1

PID (primary immunodeficiency) group: https://www.facebook.com/groups/journeyintowellnesspid

Instagram: @journeyintowellnesscoaching

My website: journeyintowellness.net

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A mother of two from Alberta, Canada, Chelsey Peat was born with a rare condition called Sturge Weber Syndrome. She was born with a large portwine stain birthmark on the left side of her face and has glaucoma in her left eye. She has had multiple surgeries including life saving brain surgery as a baby.

Sturge-Weber syndrome (SWS) is a rare disorder affecting the skin and nervous system. Babies with SWS are born with a birthmark on their face known as a port-wine stain. Port-wine birthmarks are caused by enlarged blood vessels right underneath the skin. People with Sturge-Weber syndrome also have clusters of abnormal blood vessels between the layers of tissue that cover the brain and spine known as leptomeningeal angiomas. They may also have increased pressure in the eyes known as glaucoma. Other symptoms of SWS may include seizures, muscle weakness, developmental and intellectual disability. SWS is caused by a mutation in the GNAQ gene. The gene mutation is not inherited, but occurs by chance in cells of the developing embryo. SWS is diagnosed based on the symptoms. Imaging studies, such as an MRI or CT-scan, are also used to aid in the diagnosis. There is no one treatment for SWS, so management involves treating the specific symptoms that are present. This may include anti-seizure medications, medications and/or surgery for glaucoma, and low-dose aspirin to reduce the pressure in the eyes and brain. The port-wine birthmark may be treated with various types of laser treatments. The long-term outlook for people with SWS is dependent on the severity of symptoms and varies from person to person. (Credits to The NIH on Rare Diseases)

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In this episode we will discuss Sarcoidosis with Frank Rivera. Frank is the Founder and President of Sarcoidosis of Long Island, is a WEGO Health Patient Leader, a Patient Ambassador at Illumina Inc, and a volunteer Patient Ambassador at The Foundation for Sarcoidosis Research.

Sarcoidosis is a disease characterized by the growth of tiny collections of inflammatory cells (granulomas) in any part of your body — most commonly the lungs and lymph nodes. But it can also affect the eyes, skin, heart and other organs.

The cause of sarcoidosis is unknown, but experts think it results from the body's immune system responding to an unknown substance. Some research suggests that infectious agents, chemicals, dust and a potential abnormal reaction to the body's own proteins (self-proteins) could be responsible for the formation of granulomas in people who are genetically predisposed.

There is no cure for sarcoidosis, but most people do very well with no treatment or only modest treatment. In some cases, sarcoidosis goes away on its own. However, sarcoidosis may last for years and may cause organ damage. (Mayo Clinic)

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Every day, gifts from donors restore health to save and improve lives. As of 2019, 165 million people in the U.S. have registered as donors, but we all need to sign up. There are still

men, women, and children waiting for a life-saving organ transplant.

Organ donation takes healthy organs and tissues from one person for transplantation into another. Experts say that the organs from one donor can save or help as many as 50 people. Organs you can donate include

Internal organs: Kidneys, heart, liver, pancreas, intestines, lungs
Skin
Bone and bone marrow
Cornea

Most organ and tissue donations occur after the donor has died. But some organs and tissues can be donated while the donor is alive.

People of all ages and background can be organ donors. If you are under age 18, your parent or guardian must give you permission to become a donor. If you are 18 or older you can show you want to be a donor by signing a donor card. You should also let your family know your wishes.

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Do you hear a constant sound in your ears, even though there is no external source linked to the noise? If so, you’re likely suffering from tinnitus, and you aren’t alone. It’s estimated that more than 50 million Americans suffer from some degree of tinnitus, 16 million Americans experience such severe ringing that they require some type of treatment, and another 2 million suffer from such debilitating tinnitus that it impacts their daily lives.

Tinnitus is marked by phantom-like ringing, roaring, hissing, buzzing, or clicking noise; in other words, the sound can be heard, yet nothing outside of the ears appears to be making the noise. Those who suffer from tinnitus experience the sound on a regular, if not constant basis. It can affect one or both ears, and be mild or severe. What causes those phantom sounds? Here’s a look at 14 of the most common causes of tinnitus.

(credits: https://bit.ly/3mm2qZt)

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Our guest this week is Shannon Wyatt. Shannon has an extremely rare condition called von Hippel-Lindau Chuvash Polycythemia (we will abbreviate to VHL). Her only symptom that led to finding VHL was that she was diagnosed with kidney cancer at 34 years old, that didn’t even have any noticeable symptoms, it was just an incidental finding on an MRI, but when they took it out, they found it was malignant. A few years later, it was pulmonary embolisms in both lungs after a routine gallbladder removal that pointed to Chuvash Polycythemia after many previous labs had raised suspicion of it.

Common signs and symptoms for VHL include:

Tumors and hemangiomas of the kidneys, pancreas, adrenal glands, liver, eyes, brain and spinal cord

Chuvash Polycythemia is typical know for causing:

Noticeable symptoms are fatigue, headaches, a reddish complexion, and itching. Dangerous underlying issues are blood clots and high pulmonary blood pressure with low systemic blood pressure.

Chuvash polycythemia is a rare, inherited disorder that is endemic to the Chuvash Republic of Russia, though it does occur in other parts of the world. NIH studies rare diseases not only to help the people who have them, but also to gain insight into gene functions that may benefit people with more common conditions. Complications of Chuvash polycythemia include blood clots and cerebral hemorrhage. The condition results from a genetic mutation that makes people unable to break down hypoxia inducible factor 2α (HIF2α), a protein that helps stimulate red blood cell production. The inability to degrade HIF2α leads to higher red cell production, even under high-oxygen conditions.

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Bleeding Disorders, also known as Hemophilia, von Willebrand Disease, Coagulation Disorders, Blood Clotting Disorders, Clotting Factor Deficiencies

Bleeding disorders are rare disorders affecting the way the body controls blood clotting. If your blood does not clot normally, you may experience problems with bleeding too much after an injury or surgery. This health topic will focus on bleeding disorders that are caused by problems with clotting factors, including hemophilia and von Willebrand disease.

Clotting factors, also called coagulation factors, are proteins in the blood that work with small cells, called platelets, to form blood clots. Any problem that affects the function or number of clotting factors or platelets can lead to a bleeding disorder.

A bleeding disorder can be inherited, meaning that you are born with the disorder, or it can be acquired, meaning it develops during your life. Signs and symptoms can include easy bruising, heavy menstrual periods, and nosebleeds that happen often. Your doctor will review your symptoms, risk factors, medical history, and blood test results to diagnose a bleeding disorder.

Your doctor may recommend medicines or clotting factor replacement therapy to treat the bleeding disorder. Some bleeding disorders are lifelong conditions, and some can lead to complications. Even if you do not need medicine to treat the bleeding disorder, your doctor may recommend taking precautions before a medical procedure or during a pregnancy to prevent bleeding problems in the future.
(credits to NIH)

TRANSCRIPT

Lita T 00:07 Hello and welcome to another episode of PodcastDX. The show that brings you interviews with people just like you whose lives were forever changed by a medical diagnosis. I'm Lita.

Ron 00:18 I'm Ron

Jean 00:19 and I'm moving to Hawaii.

Lita T 00:21 No, she's not

Jean 00:22 it snowed again last night.

Lita T 00:23 I know but

Ron 00:24 and today

Jean 00:25 and today

Lita T 00:26 still not moving to Hawaii.

Jean 00:27 ohhh moving to Hawaii

Lita T 00:28 Remember when you said you cannot shovel lava?

Jean 00:30 Lava

Lita T 00:31 Okay,

Jean 00:31 this is true.

Lita T 00:32 We're staying here.

Jean 00:33 Okay.

Lita T 00:33 Collectively we're the host of podcast dx. March is bleeding disorders Awareness Month, although bleeding disorders may be acquired. On today's show, we're going to be talking about the most common inherited bleeding disorder, von Willebrand disease,

Jean 00:53 someone with (unitelligable) the blah...blah

Lita T 00:55 What?

Jean 00:56 Someone living with a bleeding disorder has blood, which does not clot properly.

Ron 01:02 When someone is injured and bleeding, a blood clot forms to hopefully...to hopefully stop that person from losing too much blood. This process requires both blood platelets and clotting factors which clump together to form something like a dam to stop the bleeding.

Lita T 01:20 Right? I remember watching Grey's Anatomy.

Ron 01:22 (Chuckle)

Lita T 01:23 Okay, we need more platelets, right?

Jean 01:26 I don't watch Grey's Anatomy...but sure I could see them saying that.

Lita T 01:28 Yeah, cuz you know, somebody is bleeding. They need more platelets!

Jean 01:31 Right

Ron 01:31 That's not scripted.

Lita T 01:33 No, it's not.

Jean 01:33 No.

Lita T 01:35 Someone with a bleeding disorder may notice that they bruise easily bleed; excessively during medical or dental procedures or when cut; have unexplained nosebleeds and bleeding gums and internal bleeding. And when I was on blood thinners...no

Jean 01:54 Here we go...

Lita T 01:54 Right? Wait was I am blood thinners or aspirin? I was either on blood thinners or a baby aspirin at one time. And I was outside gardening. And I grabbed a thorn bush. Right? I was clipping and the thorn punctured something on my wrist. And I'm watching it and it's going: squirt, squirt, squirt, and I'm just watching it. I like Isn't that interesting? As it squirting like a squirt gun every you know it would like with my pulse. Squirt, squirt, squirt. And then finally I said: "Okay, better stop this." So, I put pressure on it to stop it. But um, yeah.

Jean 02:24 We're all surprised she's still here. (Chuckle)

Lita T 02:36 (Boisturious laughter)

Ron 02:36 But you definitely painted a picture.

Lita T 02:38 Yeah. Right. So that's what it would be like, if you have a bleeding disorder.

Jean 02:41 I don't know if that's exactly what it would be like, that sounds like an arterial spray that squirting in very, very dangerous.

Lita T 02:47 Okay, that's a bleeding disorder.

Jean 02:49 Bleeding problem.

Ron 02:50 So

Lita T 02:51 yeah.

Ron 02:52 In addition to obtaining a complete medical history, your healthcare provider may order a complete blood count, a bleeding time test and or a platelet aggregation test to help diagnose your condition.

Jean 03:07 And have you guys ever had a bleeding time test?

Ron 03:10 Me personally? No.

Jean 03:11 Oh, they like cut your, nick, your ear and then stand there and wait to see when it stops bleeding.

Lita T 03:18 (chuckling)

Jean 03:19 That's what I remember.

Lita T 03:19 like watching. paint dry?

Ron 03:20 I don't like your doctor's.

Jean 03:21 Yeah, well, that wasn't my doctor. That was my mom. Oh, no, just kidding. Okay. Um, treatment for bleeding disorders will likely depend on the severity and cause of the specific bleeding disorder an individual has.

Lita T 03:33 Right. And although I had never heard of it before, today, the most commonly inherited bleeding disorder is von Willebrand disease.

Ron 03:45 Well I can say that approximately 1% of the population here in the US are affected by von Villa brain disease. And it's characterized by an insufficient amount of a protein. Ironically, the von Willebrand factor or VFW

Jean 04:03 VWF

Lita T 04:04 The VFW hopefully doesn't. It's causing you to bleed you're going to the wrong VWF

Ron 04:11 Did I say I do glasses. I'm sorry, the von Willebrand factor or v w F, which aids in the clotting,

Lita T 04:18 right? There are three forms of von Willebrand disease.

Jean 04:24 We're gonna say it differently every time you say

Lita T 04:26 Yes, okay. Individuals with type one have less VWF than average and may have associated bleeding issues.

Jean 04:37 Were and those living with type two von Willebrand disease have enough v wF in their system, but their Vidya wF does not function correctly or is incorrectly formed. And

Ron 04:49 type three, v w.f

Jean 04:52 Vwd willen brand disease Oh, tight as opposed to von Willebrand factor. Oh, Okay,

Lita T 05:00 okay. So type three v WD.

Ron 05:03 Okay? So type three v WD is very serious individuals with this form of von Willebrand disease, do not make v w f at all. Oh, yeah, right. And their platelets cannot clot and this is very This is a very serious condition which makes bleeding difficult to control.

Lita T 05:23 That sounds terrible. Individuals with von Willebrand disease should typically avoid taking medications which may increase their risk of bleeding such as aspirin, or non steroidal anti inflammatories.

Jean 05:37 And if you have a bleeding disorder, it is vital that you inform your health care providers, including your doctors and dentists. And I would suggest if you know if it's a very serious form, that you have an ID bracelet that states that

Lita T 05:50 Oh, yeah, for sure. And carry a lot of gauze.

Jean 05:54 I don't get a tourniquet. I don't think you should be able to carry a tourniquet, no band aids. I think people that carry Okay, tourniquets are very serious,

Lita T 06:02 right. Okay. If you would like to know more about bleeding disorder awareness, check out the link to the national hemophilia foundation Foundation's website which will be on our web page, or you may want to donate to a red tie fundraiser.

Jean 06:21 And I think Haemophilia is what we've all associated with writing disorders. That's what I've heard, right? But it's very, very rare. It just gets a lot of publicity, because you hear about, you know, like Royals hat being haemophiliac and or being haemophiliacs because,

Lita T 06:34 you know, that's, that's where it came from.

Jean 06:37 No, it's just inbreeding, and the those, you know, because then you're passing the factor on and you're increasing the chance, or likelihood that two people with the same factor will pass it on. But

Ron 06:47 that's the most common, right. No,

Jean 06:49 no, no, it's not. It's very rare. von Willebrand disease is the most common. Isn't that weird? And we've never heard of that. Yeah, right. That's Yeah, it's very counterintuitive. It is very counterintuitive. But that's what the internet says, and we believe everything on the internet.

Lita T 07:07 And gene would like you to know about a blood parfait recipe in case you wanted to share this with your friends.

Jean 07:17 Well, the National hemophilia foundation does try to utilize different techniques to help people understand more about their blood and clotting. And to help illustrate that, they suggest that you could try to make a blood purvey, you could use a cream colored substance like vanilla ice cream, or maybe a yogurt as your base use Cheerios. And that will represent your platelets, although they're nice and round, which I don't understand. And you kind of want something like awkwardly shaped but red m&ms or red Hots, and those could be the red blood cells, white chocolate chips, or mini marshmallows. And these can be the white blood cells, pretzels. And these can be the fibrin which is the kind of the stuff that joins with platelets to form that your clot, okay. Gummy worms in the eye can actually represent the V WD. And to top it off, put on some rainbow sprinkles, and that'll represent the 13 other blood factors.

Lita T 08:14 Yeah, we'll be doing that.

Ron 08:18 I gotta tell you, I learned quite a bit on this. This morning.

Lita 08:21 Oh well, that's

Jean 08:22 that's good.

Lita T 08:23 Yeah, I'm glad somebody did. Yeah, I

Jean 08:24 learned we're not moving to Hawaii.

Lita T 08:26 No, we're not moving to Hawaii.

Ron 08:28 Well, for our listeners, if you have any questions or comments related to today's show, you can drop us a line at podcast dx@yahoo.com through our website, podcast, dx comm on Facebook pitter pitter pitter patter pitter patter on

Jean 08:47 his own app. Wow. Have you heard from somebody on Twitter? I hear they have a lot of patter.

Ron 08:54 Let's try this again. Okay, through our website, podcast, dx.com on Facebook, Twitter, Pinterest, or Instagram,

Jean 09:02 I can appear as a combination of Twitter and Pinterest. I like it.

Lita T 09:05 Yeah. Okay. And if you have a moment to spare, please give us a review wherever you get your podcast. As always, please keep in mind that this podcast is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of a physician or other qualified health care provider with any questions you may have regarding a medical condition or treatment and before undertaking a new health care regime. Never disregard professional medical advice or delay of seeking it because of something you have heard on this podcast till next week.

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Trisomy is an abnormality in which an organism has the wrong number of chromosomes. In humans, a normal baby will have 46 chromosomes in 23 pairs, with each parent contributing 23 chromosomes. When trisomy occurs, the individual is born with three instances of a particular chromosome instead of the usual two, resulting in 47 total chromosomes instead of 46. The results of this extra data can vary, but tend to manifest in the form of birth defects, some of which can be quite severe.

The most common cause of trisomy is a problem in the duplication of chromosomes to create egg and sperm cells. Somewhere along the way, a chromosome duplicates itself twice, creating a full pair. When the egg or sperm cell joins with its counterpart, the extra chromosome is taken along, creating a set of three where should be two. In some cases, a chromosome only duplicates partially, leading to partial trisomy.

Some of the more well-known forms of trisomy are trisomies 13, 18, and 21. Trisomy 13 is also known as Patau syndrome, after the doctor who identified it. Patau syndrome is characterized by physical and mental defects, with heart defects being very common. Trisomy 18 is known as Edward's syndrome, and it is accompanied by severe mental and physical problems; most patients do not survive beyond a year. Trisomy 21 is Down's syndrome, a condition which is often accompanied by severe mental disabilities.

There are other forms; trisomy 16, for example, usually triggers a miscarriage, while trisomy 9 leads to malformations in the skull and nervous system. The number in each name refers to the chromosome in question; in some cases, patients have mosaic trisomy, meaning that the defect only shows up in certain cells. Trisomy 16 is believed to be the most common form in humans, while trisomy 21 is the most common form in viable infants.

It is possible to test for trisomy, along with other potential birth defects, and women who are at risk for the condition may undergo prenatal testing to check for it. If a prenatal test such as an amniocentesis reveals a trisomy, a doctor will discuss options with the patient. In some cases, doctors may recommend that the pregnancy be terminated, because the baby is nonviable. Some parents may choose to carry on with the pregnancy anyway, for ethical or moral reasons. Some people with trisomy leave happy, full lives, while other infants survive for only a short time after birth.

[tri´so-me] the presence of an additional (third) chromosome of one type in an otherwise diploid cell (2n +1). adj., adj triso´mic.

Trisomy 8 syndrome is a syndrome associated with an extra chromosome 8, usually mosaic (trisomy 8/normal), characterized by mild to severe mental retardation, prominent forehead, deep-set eyes, thick lips, prominent ears, and camptodactyly (abnormally flexed fingers).

Trisomy 13 syndrome/ Patau's Syndrome

Holoprosencephaly due to an extra chromosome 13, in which central nervous system defects are associated with mental retardation, cleft lip and palate, polydactyly (extra fingers or toes), and dermal pattern anomalies, as well as abnormalities of the heart, viscera, and genitalia.

Trisomy 18 Syndrome/ Edwards Syndrome is a condition due to the presence of an extra chromosome 18, characterized by neonatal hepatitis, mental retardation, scaphocephaly or other skull abnormality, small receding mandible, blepharoptosis (drooping eyelids), low-set ears, corneal opacities, deafness, webbed neck, short digits, ventricular septal defects, Meckel's diverticulum, and other deformities.

Information for families affected by this disorder and professionals caring for affected individuals can be obtained from the Support Organization for Trisomy 18, 13, and Related Disorders (S.O.F.T.), 2982 S. Union St., Rochester, NY 14624.

Trisomy 21 Syndrome/ Down Syndrome. Parents can find out more here: National Down Syndrome Society

Trisomy 21 is the most common chromosomal anomaly in humans, affecting about 5,000 babies born each year and more than 350,000 people in the United States.

Trisomy 21 is a genetic condition caused by an extra chromosome. Babies with Down syndrome however, end up with three chromosomes at position 21, instead of the usual pair.

Parents can find assistance here: Support for Disorders of Chromosome 22

Trisomy 22 is a chromosome disorder in which an extra (third) copy of chromosome 22 is present in every cell of the body where there should normally only be two copies. This condition is commonly found in miscarriages, but only rarely in liveborn infants. Most affected individuals die shortly before or shortly after birth due to severe complications. Common features include an underdeveloped midface (midface hypoplasia) with flat/broad nasal bridge, malformed ears with pits or tags, cleft palate, hypertelorism (wide-spaced eyes), microcephaly and other cranial abnormalities, congenital heart disease, genital abnormalities, and intrauterine growth restriction (IUGR).

(Credits to: Miller-Keane Encyclopedia and Dictionary of Medicine, Nursing, and Allied Health, Seventh Edition.)

TRANSCRIPT:

s8e14 Trisomy

Lita T 00:08

Hello, and welcome to another episode of podcast dx, their show that brings you interviews with people just like you whose lives were forever changed by a medical diagnosis. I'm Lita.

Ron 00:19

I'm Ron,

Jean 00:20

and I'm Jean Marie.

Lita T 00:21

Collectively we're the hosts of podcast dx. March is trisomy Awareness Month, they're spelled t r i s o MY. With that in mind, we're going to talk about a few of the more common forms of trisomy today.

Ron 00:39

Right? Let's go over a bit of background here, humans have 23 pairs of chromosomes. And of these 22 are autosomes. The 23rd pair of chromosomes determines what genetic or physical sex characteristics an individual is born with, ie whether they're born male or female.

Jean 00:59

Okay, so let's picture 23 pairs of shoes and shoe boxes, numbered one to 23 lined up against a wall. Okay, if you open any one of those shoe boxes, you'll see two individual shoes that looks nearly identical mirror images of one another. If you counted up all of the shoes in the 23 shoe boxes, you would have 46 individual shoes in total. So 23 pair 46 total.

Lita T 01:27

Okay.

Jean 01:29

And now picture, there's a glitch in the mechanism at the shoe factory. They're going down. There is a hesitation in the assembly line and a mistake is made putting an extra shoe into one of the boxes that ends up in our shoe lineup. Now if you open that box, there's three shoes in there.

Lita T 01:47

Lucky, you

Jean 01:48

no not really

Lita T 01:49

because and you still have to use that extra shoe all the time.

Jean 01:53

Yep.

Lita T 01:53

So how do you do it?

Jean 01:55

not easily.

Lita T 01:55

So it may sound as if we're making light of these conditions. But we're not we understand that genetic disorders are very serious and can be scary for new parents. Please keep in mind that these conditions are often a result of a random occurrence and not the parents fault. Please consult a qualified genetic counselor and your health care provider. If you or your partner have experienced a pregnancy loss because of trisomy, please take heed that it may not occur again. It's not like at all the time

Jean 02:29

right but a bit about approximately or it's thought that about half of pregnancy losses due to trisomy

Lita T 02:36

seek out physical and mental support. You're not alone.

Ron 02:41

Right, those are great points. Lita. Now getting back to trisomy the term trisomy was first used in the 1930s to describe a cell with an extra chromosome, kind of like what gene was talking about with the shoes. The route tri meaning three refers to a third chromosome, where there would typically only be a pair of chromosomes. trisomy is rare and may occur in some cells, mosaic trisomy or in all of the cells a full or complete trisomy, several forms of complete trisomy will not result in a live birth. There is also something called a partial trisomy, which occurs when there are two full chromosomes and a partial chromosome. But back to the shoe analogy two shoes. And let's say a shoe heel.

Lita T 03:35

That would be a partial

Ron 03:36

Yeah, right.

Jean 03:38

And yeah, what are you going to do with an extra heal? This specific diagnosis and his overall effect on an individual's physical, intellectual and developmental health will depend and which chromosome is affected and several other key factors, especially you know, is it mosaic or complete or partial? Typically individuals with trisomy have a distinctive forehead, eye and nose characteristic for that particular form of trisomy and health issues can vary widely and from nearly undetectable and have barely any symptoms to fatal.

Ron 04:15

right, right, right. Right. Now we're going to talk briefly about five of the more common autosomal forms of trisomy found in humans. trisomy 8, 9, 13, 18 and 21.

Lita T 04:31

Okay, trisomy eight, mosaic mosaic says

Jean 04:35

mosaicism

Lita T 04:36

mosaicism mosaicism syndrome, that's hard to say abbreviated as T 8 MS occurs when there are three number eight chromosomes. So the eight, so the number is referred to as the number of chromosomes.

Jean 04:55

Nope.

Ron 04:56

Well, it's like the pair of shoes she was talking about

Lita T 04:57

Oh number eight chromosome.

Jean 04:59

So looking Back at my rather convoluted analogy...

Lita T 05:02

Yeah

Jean 05:02

... in shoe box number eight

Lita T 05:04

Okay, okay

Jean 05:04

along the wall, you have three shoes,

Lita T 05:06

okay instead of two,

Jean 05:08

right

Lita T 05:09

Um, and individuals with trisomy eight mosaicism syndrome have a third copy of chromosome eight in some, but not all of their cells.

Ron 05:22

Yeah,

Lita T 05:22

okay.

Ron 05:23

So trisomy eight mosaicism syndrome is also known as Warkany Syndrome 2 individuals with this genetic disorder may have intellectual disabilities and or issues with their joints, especially in the knees. They may also have problems with their kidneys, their heart, their spine, and or their skeletal system. And it occurs far more often, four to one ratio in those born with male reproductive organs than those born with female reproductive organs. It is typically the result of a random change in the chromosomes. But it is not something that is typically inherited. Individuals with trisomy eight mosaicism syndrome may be more susceptible to infections and at a higher risk for some cancers.

Jean 06:18

On to trisomy nine, complete and mosaic. trisomy nine are rare chromosomal conditions which are often fatal. The life span for individuals with partial trisomy nine may not be affected. So if you have

Lita T 06:34

complete

Jean 06:34

if you have an extra chromosome in all of your alongside all of your nine, or if you have it in most of your cells, then it's fatal, or most likely fatal. And if you have it just a little piece of chromosome extra piece of chromosome nine, you might be fine.

Lita T 06:53

Okay

Jean 06:54

Your lifespan might be fine,

Lita T 06:55

okay. Some signs and symptoms of partial trisomy nine may include heart spinal cord and brain defects, which may be detected with prenatal ultrasound. Partial trisomy nine may also result in issues with the individual's head and nose shape, the joints, the eye, and also kidney problems. These individuals may have cognitive and developmental delays.

Ron 07:25

And then I think it's pronounced Patau?

Lita T 07:30

Patau ?

Ron 07:31

Patau syndrome, or better known, I guess, is trisomy 13. This is often fatal in infancy. And again, this condition is a result of a random chromosomal change. It may affect the heart, the brain, the spine, eyes, fingers, toes, and basically the overall muscle tone of the individual.

Jean 07:55

And then there's um, trisomy 18, which is also known as Edwards syndrome, which is often fatal. Those individuals who do not live past their first year of life may have severe intellectual challenges, defects in the internal organs and heart. Their fists may be constantly clenched and their fingers may overlap. And that's a distinctive feature of trisomy 18.

Lita T 08:20

Okay? And trisomy 21, also known as Down syndrome, is one of the more common and well known forms of autosomal autosomal, autosomal trisomy, individuals with trisomy 21 may have mild to severe intellectual disabilities. Typically, children with Down syndrome reach developmental milestones a bit late, the lifespan for individuals with Down syndrome has been increasing. Jean said that Well, back in the, well, I, we had a neighbor who had Down syndrome when I was young.

Jean 08:32

autosomal, Mhhmm

Lita T 09:00

And we were talking about when I was like, eight, and I think he lived to maybe 40 years old. What's the lifespan? Now?

Ron 09:10

ummm 60 isn't it?

Jean 09:11

Yeah, it isn't, it is in the 60s, it went from like 25 to 60 in a rather short period of time, and the more that we realize that individuals with Down syndrome, you know, are capable of living...

Ron 09:23

Right

Jean 09:23

... a full and rich life, the longer the lifespan will, you know, be

Ron 09:27

a lot of it has to do with integrating into society and not being shut away.

Lita T 09:31

Right. At one time they had just institutions that would be put in right?

Ron 09:35

exactly, exactly

Jean 09:36

yeah, having, you know, you know, family structure

Lita T 09:40

Right

Jean 09:40

and support system and realizing that you you know, you can

Ron 09:45

and we also have to add too, like with a lot of these private companies and government that help support, you know, it gets people out in the community to get some work and get them involved in things and that contributing,

Jean 09:59

right we follow

Ron 09:59

to the lifespan

Jean 10:01

runway model on Instagram with debt lives with down syndrome or was born with Down syndrome and some other people who are living Yeah, very full rich lives.

Ron 10:10

Right? Right. Right, right. So trisomy and other genetic disorders are very complicated, which we have just talked about, we will include several links to them on our website. And if you'd like to learn more or have concerns, you know, you can please You can contact your your health care provider, I'm sure they can give you more information,

Jean 10:34

right? Yeah, we didn't mention it. But your, your chances of having a child with Down syndrome increase the old as you get older, and it's the, they're not entirely sure as to why it's thought that the proteins that hold those two chromosomes together denatures over time, just like if you have a banana, and when the banana, you first get it, it's green, and you know, nice and solid, but then as it ages that kind of turns to mush. Well, that bond between the two chromosomes splits. And then you have these wandering chromosomes,

Ron 11:07

Gotcha

Jean 11:07

and they will bond with other chromosomes. And then you have a third, there's also Well, there's the opposite spectrum of trisomy where you have only one chromosome and that also causes some issues.

Lita T 11:20

So age, age is a factor.

Jean 11:22

Age is a factor for women.

Lita T 11:24

If you have any questions or comments related to today's show, you can drop us a line at podcast dx@yahoo.com through our website, podcast, dx dot com, on Facebook, Twitter, Pinterest or Instagram.

Ron 11:38

If you have a moment to spare, please, please please give us a five star review wherever you get your podcast. And as always, please keep in mind that this podcast is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding medical condition or treatment, and before undertaking a new health care regime, and never disregard professional medical advice or delay in seeking it because of something that you have heard on this podcast

Jean 12:12

till next week.

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Lauren, is here speaking with us today about Lysosomal Storage Disease. Lauren has four siblings whom she loves dearly, and graduated in 2011. She worked at a community center until COVID put a hold on social gatherings. She considers herself a social person and is grateful for the chance to get her story out into the world.

Lysosomal storage diseases are inherited metabolic diseases that are characterized by an abnormal build-up of various toxic materials in the body's cells as a result of enzyme deficiencies. There are nearly 50 of these disorders altogether, and they may affect different parts of the body, including the skeleton, brain, skin, heart, and central nervous system. New lysosomal storage disorders continue to be identified. While clinical trials are in progress on possible treatments for some of these diseases, there is currently no approved treatment for many lysosomal storage diseases. (Credits to RareDiseases.Org)

TRANSCRIPT

SPEAKERS

Lita T, Lauren, Jean, Ron

Lita T 00:09 Hello, and welcome to another episode of PodcastDX, the show that brings you interviews with people just like you, whose lives were forever changed by a medical diagnosis. I'm Lita ...

Ron 00:20 and I'm Ron,

Jean 00:21 and I'm Jean Marie.

Lita T 00:23 Collectively, we're the hosts of PodcastDX. Our guest today is Lauren Ryan. She has four siblings whom she loves dearly. She graduated in 2011 and works at a community center. Not this year because a COVID. She's a very social person and grateful for getting her story out to the world. And today she's going to be talking to us about lysosomal disease.

Jean 00:50 Hi, Lauren.

Ron 00:51 Lauren, thank you for taking the time to join us today. Please start out by telling us and our listeners. What exactly is, and I hope I'm pronouncing this right, Galactosidosis Lysosomal Disease? And please for the rest of the episode, can we abbreviate this and just call it Galacto? Is that okay?

Lauren 01:18 Yes, you may call it that. Galactosidosis, also known as Galactosialidosis is a condition that affects many areas of the body. The three forms of Galactosidosis are distinguished by the age at which symptoms develop and the pattern of features.

Jean 01:50 And Lauren what were the symptoms that you started having and at what age did they develop?

Lauren 01:57 Well, I had Galactosidosis...they diagnosed me when I was born.

Jean 02:05 Okay.

Lauren 02:05 So, the early infantile form of Galactosialidosis is associated with extensive swelling caused by fluid accumulation before birth, a soft out-pouching in the lower abdomen (an inguinal hernia), and an enlarged liver and spleen. Additional features of this form include abnormal bone development and distinctive facial features that are often described as "coarse." Some infants have an enlarged heart, an eye abnormality called a cherry red spot, which can be identified with an eye examination; and kidney disease that can progress to kidney failure. Infants with this form usually are diagnosed between birth and 3 months; they typically live into late infancy. The late form of Galactosialidosis shares some features with the early infantile form, although the signs and symptoms are somewhat less severe and begin later in infancy. This form is characterized by short stature, dysostosis multiplex, heart valve problems.

Lita T 04:23 Oh, that's a hard one.

Ron 04:24 Yes, it is. Yeah,

Lita T 04:25 Let me see if I can help you with that one: heptyl ...let's see

Jean 04:28 Hepato...

Lita T 04:29 Hepato ...hepato

Ron 04:30 Hepato...

Lita T 04:31 Oh Hepatosplenomegaly,

Jean 04:35 I don't think that's it.

Lita T 04:36 Okay. I think it has to do with the the liver and the spleen.

Ron 04:41 Can I take a stab at it?

Jean 04:42 Yeah,

Lita T 04:42 Yeah.

Ron 04:45 Hepato..splen...nom...ah...gally,

Lita T 04:48 Okay. Anyway,

Jean 04:49 One day we'll get hosts that actually know how to pronounce medical terms. But, today is not the day! I'm sorry.

Lita T 04:54 Right. That's okay, go ahead, Lauren.

Lauren 04:55 ...and "coarse" facial features. Other symptoms seen in some individuals with this type include intellectual disability, hearing loss, and cherry red spot. Children with this condition typically develop symptoms within the first year of life. The life expectancy of individuals with this type varies depending on the severity of symptoms. The juvenile form of Galactosialidosis has signs and symptoms that are somewhat different of the other two types. This form is distinguished by difficulty coordinating movements, muscle twitches, seizures, and progressive intellectual disability. People with this form typically also have dark red spots on the skin, abnormalities in the bones of the spine, "coarse" facial features, a cherry red spot, vision loss, and hearing loss. The age at which symptoms begin to develop varies widely among affected individuals, but the average age is 16. This form is typically associated with normal life expectancy.

Lita T 07:01 Thank you, thank you for sharing that.

Ron 07:02 Yeah, that's... that's definitely a lot Lauren. Can you please tell us how someone gets Galacto?

Lauren 07:10 It is caused by a mutation of CTSA gene. Galactosialidosis belongs to a larger...a large family of lysosomal storage disease, each caused by the deficiency of a specific lysosomal enzyme or protein. In Galactosialidosis, impaired functioning of cathepsin A and other enzymes causes certain substances to accumulate in the lysosomes.

Lita T 07:59 Okay,

Jean 08:00 and I think we've said this of many chronic illnesses and diseases: it's...you have to become like a subject matter expert, because I think for most people, like myself included, when you mentioned lysosomes and things, I'm just...I draw a blank!

Lita T 08:15 Right

Jean 08:15 Because it's just...the body is so complex

Lita T 08:18 It is, but basically what it is, it's a metabolic disorder. So we'll...we'll leave it at that as far as a simplistic term. And thank you, Lauren. I think our listeners will have a little bit of an understanding of what we're talking about now and we will have links on our website so that people can learn more. Also. Could you please tell us how did your condition develop? And I kind of missed when you said...when did your...when did yours...

Jean 08:51 I think she said infancy, right?

Lita T 08:52 Early infancy or late infancy? I don't remember what you said.

Lauren 08:57 So I was diagnosed at birth.

Lita T 09:00 Oh, at birth.

Lauren 09:01 When I was born.

Lita T 09:02 Okay.

Lauren 09:03 Yeah.

Lita T 09:04 Okay, and how has it developed with you over time? What have been the symptoms that you've had to ah...to deal with here?

Lauren 09:15 Well, I have had like little to no symptoms over the course of the year. Like they haven't noticed any changes or anything with my disease in particular. But it's different for every person.

Lita T 09:38 Sure.

Ron 09:38 Right.

Lauren 09:39 Living with like a chronic illness or disease or whatever. And so it's gonna be different for everybody. For me, I haven't noticed like any abnormal symptoms or whatever.

Jean 10:00 I did notice that you said the cheery red spot, which is something an eye doctor would have to see like, by looking at your retina, does that affect your vision at all?

Lauren 10:12 I don't think it does. No.

Jean 10:14 Okay, okay.

Lauren 10:14 I go see an eye doctor, a pediatric doctor every year.

Jean 10:22 Okay, okay.

Lauren 10:23 Just to see if my vision has changed at all.

Lita T 10:29 Okay.

Jean 10:31 And Lauren, how is Galacto or lysosomal storage disorder treated?

Lauren 10:37 The variant that occurs in infants can be treated in several ways: So, it can be treated with intravenous (IV) enzyme replacement. Or it can be done with bone marrow transplant, to slow the disease progression. Or umbilical cord blood stem cell transplantation, to restore missing enzymes.

Ron 11:01 Okay

Lauren 11:10 And for adults, the treatment is symptomatic and supportive; for example, taking medication to control seizures. Individuals with Galactosialidosis are encouraged to routinely see their genetic counselors, neurological, optha...

Lita T 11:45 Ophthalmological

Lauren 11:45 Ophthalmological,

Lita T 11:52 Right, right ophthalmological I can't say it either today.

Lauren 11:56 ...ophthalmological, and other specialists as symptoms arise and to keep symptoms controlled.

Jean 12:08 Okay, it makes...Yeah, that makes a lot of sense. So you're treating the symptoms as they come along? And can lysosomal storage disorders...is there a...like a cure or a potential cure? I know, you said that, you know, like bone marrow transplantation can help slow the progression. Are they thinking you know about gene editing or anything like that in the future?

Lauren 12:29 There, there isn't a cure for lysosomal storage disorders, a few treatments can help. And I actually went to St. Jude's Children's Research Hospital, in Memphis Tennessee. And like, in the beginning, they weren't gonna do a bone marrow transplant. But they, they did research on that and found it too risky.

Lita T 13:02 Okay

Jean 13:03 Okay

Lauren 13:04 So, for now, their doing the enzyme replacement therapy. Which they still have to get past the FDA.

Jean 13:16 Ooh...

Lauren 13:16 ..which has been...it's over 10 years now...

Lita T 13:22 Wow!

Lauren 13:22 ...that it's been at the FDA. So, I've been waiting over 10 years.

Ron 13:29 Wow.

Jean 13:30 Well, and I would have to say for all of our listeners out there: if you can donate bone marrow, it's a quick cheek swab to see if you're a match for someone who needs it. So, hopefully this interview will encourage more people to get out there. And you know, donate.

Lita T 13:47 Right,

Ron 13:47 Right. So, Lauren, can you tell our listeners how common are these lysosomal storage disorders? Are they rare or they pretty common or what can you tell us?

Lauren 14:00 Sure, more than 100 cases of the lysosomal storage disease have been reported. Approximately 60% of people with Galactosialidosis have the juvenile form. Most people with this type of condition are of Japanese descent. Now I have contact with three people with Galactosialidosis. And only one of them have like, are close to me medical wise.

Lita T 14:51 Okay,

Jean 14:51 And yeah, I think we said earlier in another episode that less than 200,000 cases is rare. So yours is

Lita T 14:59 100

Ron 14:59 Very rare.

Jean 15:00 Very, very, very rare.

Lauren 15:02 Yeah.

Jean 15:02 Well, I'm glad that you were able to find someone to be part of you know, your group. Because um, yeah, that can help.

Ron 15:09 What I find interesting too is the last thing she said about most people are of Japanese descent. I mean, that's pretty specific

Lita T 15:18 Of the...of the...adult and juvenile right. The one that's from birth...not necessarily right?

Jean 15:24 Okay.

Ron 15:25 So, so Lauren, what was the first symptom or the symptoms that first made you realize...

Jean 15:32 or your parents?

Ron 15:33 Yeah, it was at birth. Yeah,

Lita T 15:33 I guess her parents. Yeah.

Ron 15:35 What was the first symptom that made your parents realize that something was different? Yeah.

Lauren 15:43 Well, when I was born, I had extra abdominal fluid

Ron 15:51 Okay

Lauren 15:51 So, I had extra fluid, like in my stomach area. And then basically, they took like a biopsy of skin from me, and my mom, and dad. To test if...to see if anything was...wrong. Or anything?

Lita T 16:15 Okay. Well, at least they had an idea. And where to look with it, which is good.

Jean 16:20 Yeah. But that's got to be tough. I mean, you know, you have a new infant and here, they're gonna take a biopsy.

Ron 16:24 Right,

Lita T 16:25 Right.

Jean 16:25 Um, Lauren, do you have...do you know if there are any studies currently going on? Either to try to find a cure or improve overall symptoms?

Lauren 16:36 I know that my researcher at St. Judes Children's Research Hospital actually has done is done everything that she can do. So, now it's up to the FDA to approve it.

Lita T 16:53 Okay, okay

Jean 16:55 Okay.

Lita T 16:55 So, the research, the research has been done, but it's got to get approved.

Ron 16:59 Wow. 10 years.

Jean 17:00 Yeah.

Lauren 17:01 Which has been taking like a long time to do!

Ron 17:05 Right.

Lita T 17:06 I wonder if...if because it's so rare. If that's what's causing the delay?

Ron 17:11 Yeah.

Lauren 17:12 Yeah, that's my guess. But the good thing is, I think my one brother is going to college for genetics.

Jean 17:22 Ooooh!

Lita T 17:23 Oh, wow! What a...talk about a special...special family bond there.

Ron 17:28 Yeah

Lita T 17:28 That's wonderful. Oh, wow.

Lauren 17:31 Yeah. He wants to find like a treatment because he doesn't...he says he wants me to live life to the fullest! And he doesn't want to see me suffer anymore. So...

Lita T 17:48 Amazing.

Ron 17:48 Yeah. Hey, Lauren, what..what role, I guess for lack of a better word, self care. What do you do for yourself every day?

Lita T 18:01 To help you get through this? Well...yeah...

Jean 18:03 Does ice or heat or swimming, you know, pool therapy...

Lita T 18:07 Is anything that makes you feel better.

Ron 18:09 Right

Lauren 18:09 Well, I have a lot of arthritis in my hip especially. So, I like to do like...a warm shower. Or just any swimming or anything is really good for your joints and stuff.

Lita T 18:30 Sure

Ron 18:31 Okay

Jean 18:32 Yeah. actually we just we were speaking with someone a little bit ago. And she designed she's designing swimsuits.

Ron 18:39 Adapted

Lita T 18:39 Adaptive

Jean 18:40 Adaptive swimwear because it's it's such a great

Ron 18:45 Need?

Jean 18:46 Yeah, they're such a great need. And there's...it's such a great thing to you know, a nice warm therapy pool is very...is fantastic for almost everyone.

Lita T 18:55 Right. Lauren...well, you already mentioned that your...your brother wants to go into geneticists...geneti...seas

Jean 19:01 Geneticists?

Lita T 19:01 I can't talk...not much at all. Genetics to help you. What other help has your family or friends done to ah...

Jean 19:11 Along your healthcare journey?

Lita T 19:12 Yeah, to get you through your healthcare journey?

Ron 19:14 We are all struggling today.

Lita T 19:14 I'm just gonna stumble all over my words.

Lauren 19:16 Well, I have three people and health care in my family.

Jean 19:24 Wow.

Lauren 19:24 So, they know a little bit about my disease. Now my mom is a nurse. So, she knows more about my condition than about like anything else. Like she reads up on it, like a lot. And just having like a mom that knows. Like, from like a disease standpoint having a mom that knows what she's doing and stuff...it's really helpful and encouraging!

Lita T 20:09 That's very important. Yeah, that's fantastic! Very important. So good support.

Jean 20:13 Yeah. Yeah,

Lita T 20:14 Right. Could you tell our listeners: what's the best advice that you've heard to cope with having a rare disease? And what advice would you give to somebody that has been recently diagnosed with a rare disease?

Lauren 20:30 The best advice for me, I think, cuz I'm very short. Short. I'm 4'3",

Lita T 20:41 Okay.

Lauren 20:42 So, it affected my growth. So, lots of times my mom would

Lauren 20:50 They say: "Good things come in small packages!"

Jean 20:54 Awww....

Ron 20:54 (Chuckle)

Lita T 20:54 I love that! I love that! Yes, yes. Excellent, excellent.

Lauren 20:58 It's something that I believe is good. Like...it's like...common. A lot of people with rare diseases say: "good things can come in small packages."

Ron 21:12 Right

Lauren 21:12 And just for anybody that's been diagnosed, I would say...so, I'm a Christian...so, I would say that, like, if you weren't supposed to be here, God's the one who created you, and he has a purpose for every...everybody going through hard things in their life. At some point, everyone, everybody is going to go through something hard. It's just, what are you going to do with the opportunity that God has given you?

Lita T 21:56 Very nice.

Ron 21:56 Yeah.

Jean 21:57 We're lucky to have someone out, you know, someone like you out there advocating for others. And, yeah, you're an inspiration!

Ron 22:04 That's definitely some great advice.

Lita T 22:05 Very nice!

Ron 22:06 Lauren, how can our listeners learn more about you? And do you have any social media accounts or anything like that, that you want to share with us?

Jean 22:06 Yep, thank you.

Lauren 22:17 Yeah, so I have an Instagram account. So, my username is: @stjude819. And then I'm also on Facebook. And I do have, like a private Facebook group on Galactosialidosis. It's where, like people with my disease can go and we can share different things...from...about our disease that will really help other people!

Jean 22:59 Okay

Lita T 23:00 I will make sure that we put those links on our website so that others can can see those. That's wonderful. Thank you very much for for joining us today, Lauren.

Lauren 23:11 You're welcome

Ron 23:14 Well, again, we appreciate you sharing your story. I know we've learned a lot and I think the rest of our listeners have also learned a lot about Galacto.

Lita T 23:25 Right and good things come in small package.

Ron 23:28 Absolutely! That's some grate advice!

Lita T 23:30 Yeah

Jean 23:30 Well, and I...I think Lita really likes that because she's a...

Lita T 23:33 I'm short.

Jean 23:34 She's petite too.

Lita T 23:35 Yes.

Jean 23:36 So um, yeah,

Lita T 23:37 I'm the shortest one in the household.

Jean 23:38 Yeah.

Ron 23:39 All right. If our listeners have any questions or comments related to today's show, they can always contact us at podcastdx@yahoo.com also to our website, podcastdx.com. They can reach us on Facebook, Twitter, Pinterest, or Instagram. And as always, please keep in mind that this podcast is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health care providers with any questions you may have regarding a medical condition or treatment and before undertaking a new health care regime and never disregard professional medical advice or delay in seeking it because of something you have heard on this podcast.

Lita T 24:27 Till next week.

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This week we are speaking with a Muscular Dystrophy Warrior!

Keisha Greaves is a motivational speaker, the founder of Girls Chronically Rock, and the Massachusetts State Ambassador for the Muscular Dystrophy Association (MDA). Girls Chronically Rock (www. girlschronicallyrock.com) offers inspired fashion celebrating Muscular Dystrophy and other chronic illnesses.

Over the past few years, Keisha has been featured in Good Morning America, Today Show, WCVB Chronicle, ABC News, Thrive Global, Politico, Improper Bostonian, Boston Voyager, Herself 360, Liz on Biz, among other outlets on and offline.

One of Keisha’s proudest moments is being featured In Today Style Heroes among other celebrities such as: Gabrielle Union, Drew Barrymore, Debra Messing and more. Another proud moment of Keisha is being featured on Channel 5 ABC Chronicle sharing her story. She’s lent her voice to audiences at the Spaulding Rehabilitation Center in Charlestown, Massachusetts General Hospital, the Boston Muscle Walk, local “Fill the Boot” events, Cambridge City Hall, and Girl’s Night Out for Muscular Dystrophy – a Boston-area fundraising event held by NextonScene. Keisha spearheaded fruitful collaborations with other notable fashion influencers which resulted in thousands of dollars raised for MDA – the most successful collaborations being with renown designer Sara Campbell and Althea Blackford, the woman behind Caribbean Fashion Week. One of Keisha’s proudest moments happened after working and meeting with Massachusetts Governor Charlie Baker: Keisha got September 30 officially proclaimed Limb Girdle Muscular Dystrophy Awareness Day. She also received the proclamation from Mayor Marc McGovern from the city of Cambridge.

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Our guest today is Karen is a wife and mother to 5 children. Her youngest, who is now 13 was born seemingly healthy. In her first weeks it became clear that she wasn't developing normally. After 10 years of looking for a diagnosis and not finding answers, they decided to do whole exome sequencing. That finally gave them an answer.

She has a mutation of her CAMK2 gene. It was so newly discovered that only a handful of people were diagnosed with this. Since it has been discovered, more children are being found to be in the family of CAMK2 mutations. It is so new that they are just beginning studying this in humans and there isn’t a formal “syndrome name” as of yet.

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Tara Parham, the daughter of a disabled USMCS Veteran, eighty-sixed her 6 figure income career in Government Healthcare and Lean Six Sigma, after falling ill with the first of 3 rare diseases that are associated with her dads exposure to Agent Orange, a dioxin used while he was serving in the Vietnam War. Her goal is to shed light on those who are struggling with the many debilitating conditions from Agent Orange and other Rare Diseases; to advocate for those who are struggling to find Help, their voice, and are unable to advocate for themselves.

TRANSCRIPT

s8e10- PodcastDx- Agent Orange

Lita T 00:10 Hello and welcome to another episode of podcast dx. The show that brings you interviews with people just like you, whose lives were forever changed by a medical diagnosis. I'm Lita.

Ron 00:22 I'm Ron

Jean 00:22 and I'm Jean Marie.

Lita T 00:23 Collectively, we're the hosts of podcast dx. Our guest today is Tara. She is the daughter of a disabled US Marine Corps veteran who had to leave her position in government health care after falling ill with the first of three rare diseases that are associated with her dad's exposure to Agent Orange. It's a dioxide,

Jean 00:48 dioxin

Lita T 00:50 used while he was serving in the Vietnam War. Her goal today is to shed light on those who are struggling with the many disabling or debilitating conditions from Agent Orange and other rare diseases, to advocate for those who are struggling to find help their voice and are unable to advocate for themselves.

Jean 01:12 Hi Tara. Hi, Tara,

Tara 01:14 Hi,

Ron 01:16 Tara to give our audience some background on Agent Orange. Birth defects are showing up in children of veterans who served in America's military during the Vietnam War. The mil, the military actually sprayed more than 20 million gallons of the powerful defoliant in Vietnam, Laos and Cambodia to deny the enemy food sources and cover 10s of 1000s of American military personnel handled, sprayed or were sprayed by the herbicide. The chemicals in Agent Orange are known to cause a variety of illnesses including several types of cancers, among other diseases. The list of illnesses tied to Agent Orange is posted on the Department of Veterans Affairs website, and they include and I may struggle with some of these

Lita T 02:09 good luck Ron.

Ron 02:12 Al amyloidosis. Chronic B cell leukemia,

Jean 02:18 leukemia,

Lita T 02:19 leukemia,

Ron 02:19 leukemia. Told you I was gonna struggle

Lita T 02:24 mmhhmm

Ron 02:24 Chloracne, Is that right?

Lita T 02:26 Well, we could try.

Jean 02:27 And actually I was just watching there's a Netflix series on now about spies. And one of the individuals who they attempt attempted to assassinate with dioxins has this and it's very, very it's a very visual type thing you can really you can definitely discern that. That's what that is.

Ron 02:48 Wow! There's also

Lita T 02:51 diabetes type 2

Ron 02:52 Yep. Thank you Hodgkin's disease, ischemic heart disease, multiple myeloma, also non Hodgkins lymphoma, Parkinson's disease, peripheral neuropathy, at least the early onset of it. Porphyria Cutanea Tarda. I hope I got that right. It also includes prostate cancer and other respiratory cancers, such as lung cancer, cancer of the larynx, trachea and bronchus. Also soft tissue sarcomas other than osteosarcoma, Chandrosarcoma Kaposi sarcoma, or mesothelioma. And a group of different types of cancers in the body tissues such as muscle fat, I'm sorry, muscle, fat, blood and lymph vessels, and also connective tissue. And it took decades for the Department of Veterans Affairs to admit that the powerful herbicide poisoned 1000s of their military members.

Jean 04:00 And that's right, Ron,

Tara 04:01 Yes

Jean 04:01 and the children of the men and women that served and were effected by Agent Orange have a possibility of being you know, like the children might be born with spina bifida that's quite common. And that's a birth defect that occurs while still in in utero, and where the spinal cord fails to close at the bottom. And then children of women that served in the same situation have a larger set of possible birth defects that the VA does recognize. And that's because women are born with the same number of eggs, you know, they they carry those with them their entire lives, whereas men are constantly producing new sperm.

Lita T 04:37 Right. And we are going to get to our guest in a minute.

Tara 04:40 I know

Lita T 04:40 I hate to put you off, but we're just trying to save you some of the background information here, Tara, According to...

Tara 04:48 No, I appreciate it.

Lita T 04:49 (laughter) That's okay. According to the VA that covered birth defects for children born to women who served in Vietnam and the Korean demilitarized zone. Include. Okay, now it's my turn.

Ron 05:02 Exactly

Lita T 05:03 Achondroplasia, cleft lip and cleft palate, congenital heart diseases. congenital talipes equinovarus Oh, that's called clubfoot. Okay, I should have just said clubfoot, esophageal and intestinal atresia, Hallerman-Streif or Steiff? stryfe Hallerman-Streiff syndrome, boy Jack's gonna have fun editing this one

Jean 05:30 Or Dom

Lita T 05:31 or Dominic, whoever gets lucky,

Ron 05:33 Dominic's shaking his head no.

Lita T 05:34 (laughter) Hip dysplasia, Hirschsprung's disease which is a congenital mega colon, hydrocephalus due to aqueductal stenosis. Hypose, hypospadias, hypospadias. We'll say hypospadias, imperforte anus, neural tube defects, Poland syndrome pyloric stenosis, syndactyly or fused digits. Oh, that's like webbed feet. Is that right? Okay. tracheoesophageal fistula? I did pretty good on that one, undescended testicle. Williams Syndrome,

Jean 06:24 and we laughed at the fact that we can't pronounce these things.

Lita T 06:27 Yeah, we're not laughing at the disease.

Ron 06:30 the sad part about is this agent orange causes all of this.

Lita T 06:33 Yeah,

Jean 06:33 Right, right

Lita T 06:34 Yeah.

Jean 06:34 And I mean, Tara, you must have become like an, you know, you have to know so much and learn so much. Because these are things that people normally

Lita T 06:44 normally don't even think about

Jean 06:45 haven't even heard.

Lita T 06:46 It's not in our everyday vocabulary. No. So, Tara, (laughter) back to you. Thank you for taking the time to speak with us today. We really appreciate it. Now, can you start our listeners out by telling us what conditions are you personally dealing with?

Tara 07:01 Yeah, well, thank you for having me. I'm really grateful to have this opportunity to speak about this. Because, as you just mentioned, all of those conditions that I'm gonna put in, quote, air quotes recognized as being caused by Agent Orange, there are a slew of other conditions. And along with medical research out there that support connections between Agent Orange and these conditions, although they're not identified as being recognized. I myself have just in the past three and a half years been diagnosed with three of those. The first is a vascular necrosis, which I have in both knees, both hips and both shoulders. A Vascular Necrosis is the the first that I was diagnosed with, which is technically called multifocal, because I have it all over. There are many citations out there that support the association between Agent Orange and a vascular necrosis. And the second diagnosis that I had was intracranial hypertension, which I actually caused me to go blind,

Lita T 08:17 Ohh!

Tara 08:17 completely blind, and I was never supposed to, I was never supposed to see again, ended up having to have a brain operation and a VP shunt, but that it's a central nervous system disorder that affects your your ventricles, your vessels, which is linked to the agent, orange dioxin similar to spinal bifida, Chiari, which there's literature out there supporting the connection to that as well.

Lita T 08:44 MMhhmm

Tara 08:44 And the third that I was diagnosed with last year was interstitial lung disease, which causes doctors to ask if I've been around birds. But it's not just me. My sister also gets it. And there is also a slew of research out there showing the connection between respiratory conditions, not just lung cancer, respiratory cancers that are related to Agent Orange. And as recently as July 21 2020. There was a research article on that by is on the VA website for lung diseases, saying that additional research needs to be done for the veteran. So if all this research still needs to be done for the veterans, there's still so much that has to happen just for their descendants, their offspring

Ron 09:41 Right,

Lita T 09:41 Right, right, because I've heard that it's also being passed on to the grandchildren. So it must be doing something

Tara 09:48 Yes

Lita T 09:48 in the genetic links, right?

Tara 09:50 Yes. Yes, it's multi generational, and it can lie dormant for years like mine didn't. It didn't show up until I was 40.

Ron 10:00 WOW!

Tara 10:00 yeah. And and my sister, my sister was actually born with webbed feet, which they recognized as one of the

Ron 10:09 conditions?

Tara 10:09 things that correct that can be passed on to descendants. That and she also has the same lung condition that I have. But so we both have it.

Lita T 10:18 Wow

Jean 10:19 and dioxins are also found in other areas. I mean, it's something that if you're, you know, say your your family wasn't exposed to Agent Orange, but you know, you should be aware of it,

Lita T 10:30 like landscapers, are you saying?

Jean 10:31 No, like on paper mills, Oh, there they are found in other areas in in industry. And this actually does kind of hit close to home because, um, Agent Orange was originally developed at the University of Illinois as a means to help grow soybeans. And it wasn't it used it

Lita T 10:38 as a chemical weapon

Jean 10:42 originally, very low doses, and then the military

Lita T 10:53 weaponized it basically.

Jean 10:54 Yeah, yeah

Lita T 10:55 Well thank you, Tara. I think our listeners have a better understanding of what we're going to be talking about now. Since we only discuss one one diagnosis per episode, we would like to discuss your battle with multifocal avascular necrosis, also known as AVN. Perhaps you're willing to come back on another episode and talk about the other problems individually? Would that be okay?

Tara 11:19 Absolutely.

Lita T 11:20 Great. So we could make this into like a mini series?

Jean 11:24 Yes Yes. Cuz I mean, it's, it's

Tara 11:26 absolutely.

Lita T 11:27 That would be really, really great.

Jean 11:28 Yeah Well, and yeah, we can kind of understand that when you when you volunteer for the military. You know, there's a lot of things that you're going to be exposed to that normal, civilians... Yeah.

Lita T 11:28 And I don't know if you're aware of, but Jean and I are both veterans. And we always support any veteran activity that's out there. Because it's also supporting us.

Jean 11:49 Actually we just, you know, we were just saying this morning that, you know, the vaccine for COVID is not mandatory, they can't really make it mandatory. However, in the military, it would be mandatory, because you're giving away your life for your country.

Tara 12:04 Yeah!

Lita T 12:04 However, does that mean you're giving away your children's lives, your grandchildren's lives, this is where this topic is going to be important.

Jean 12:12 And there is there is the onus on them to keep their personal safe.

Lita T 12:16 Yeah.

Jean 12:16 And whenever possible, prevent, you know, disease and illness

Lita T 12:20 Right

Jean 12:20 that kind of situation,

Lita T 12:21 right

Tara 12:22 Yep. I completely agree. And oftentimes, you know, the military families, the sacrifices that they make when their loved ones are off serving, or the sacrifices, in this case, their health. So I completely agree.

Lita T 12:39 Well, yeah, we never would have expected this type of a reaction based on Agent Orange, but now we're learning

Jean 12:47 Yeah. And

Tara 12:48 I know,

Jean 12:49 Tara, can you tell us? What is AVN? And which bones? You said that you have it? It's multi

Lita T 12:55 shoulders?

Jean 12:56 Yeah. Shoulders in everything? Can you tell us which exact which joints are affected in your body?

Lita T 13:01 And what is it

Jean 13:01 in? What is it? Yeah,

Tara 13:04 sure. Well, avascular necrosis is It's the result of reduction of the blood flows to the bone. I, I have it in both knees, both hips, both shoulders, which basically means my bones didn't get enough of the blood, which caused them to start to die. And once the bones start to die, they don't just regenerate themselves. Now, here's an interesting fact. I was diagnosed with this three and a half years ago, my dad, the veter... the Vietnam veteran was just diagnosed with that three months ago. And

Jean 13:41 Oh my gosh,

Tara 13:42 and there's multiple, like I said, there's multiple citations out there of so many other veterans and their descendants, who have also been diagnosed with avascular necrosis. But what it does is as the bone dies, it brings the entire joint with it. So oftentimes, it's missed. It's not diagnosed until it's until at a later stage, which makes it a lot more complex. And it's very hard to find.

Lita T 14:14 Does it start out? Yeah, the symptoms as they start out, is it does it feel like a arthritic type of a feeling or how did the symptoms start with you?

Tara 14:24 Well, what started interestingly, I woke up one morning and I thought that I had twisted my knee and my sleep. So it felt like a torn ligament in my knee. And I ended up going to the emergency room and I was misdiagnosed with bone cancer. Because

Ron 14:44 Oh Wow,

Tara 14:45 it Yeah, it looks like bone like white specks all in my bones.

Jean 14:52 Mhhmm

Lita T 14:52 Ohhh!

Tara 14:52 And that's the dead bone marks. They're called bone infarct. So I have that as well as, as the death on the end of the bone, which is the a vascular necrosis too. So that was the initial diagnosis. And I, it took me all over the country, I ended up going to Mayo Clinic in Rochester, Minnesota to trying to find a diagnosis and help, which ultimately landed me in New York City at New York Presbyterian, where I found a doctor to do a bilateral hip procedure on me to try and slow down the progression.

Lita T 15:31 Okay

Tara 15:32 So, and maybe I should touch more on, I guess, how do you want me to touch more on the connection between avascular necrosis and Agent Orange?

Lita T 15:42 Sure, sure.

Tara 15:45 Okay, hold on, let me get let me get there, my notes...

Lita T 15:49 she that's what Jean was saying. You have to become a expert.

Jean 15:53 Subject matter expert I think there should be honorary doctorates.

Lita T 15:56 Yes.

Jean 15:57 For patients like you. Yeah

Tara 15:59 Yeah, you have to you have to be your own, like advocate. And that's the biggest challenge especially says it's considered rare. There's not a lot of doctors who actually have the knowledge that you need. So you get Misdiagnosed, and you get misinformation, which causes you to lose time, and your options for treatment diminish.

Ron 16:25 Absolutely

Tara 16:25 So hold on one second. Sorry.

Jean 16:29 And I think Mayo Clinic is very interesting in Rochester, Minnesota, because the weather gets so cold there. I like to call it mole city. I don't know if they would agree with me calling it mole city

Lita T 16:39 (laughter) the tunnel.

Jean 16:39 But there's tunnels underground that connect the hospital to like the hotels, the hospital to the grocery store, to the library. So you don't have to go out there. freezing cold

Lita T 16:49 It's very nice. It's very nice

Jean 16:50 It's unique. It's it's kind of fun.

Lita T 16:52 Right?

Jean 16:53 And there's little shops all along the route.

Lita T 16:55 Yes.

Tara 16:55 Okay. Here we are. So the connection with the a vascular necrosis, and Agent Orange. So Avascular Necrosis, like I said, it's a result of the reduction of the blood flow to the bone. And Agent Orange has an adverse effect on blood vessels. So there's medical literature, literature that support Agent Orange, and the dioxin is capable of lying dormant and the effects that it has on the blood vessels. So it's actually the result? Yeah, hold on one second.

Lita T 17:32 I know I read the word stenosis and a couple of the different results.

Tara 17:37 By patients?

Lita T 17:38 Right. So stenosis is is reducing in size, so possibly, the blood vessel size is reduced at the at the bone. Could that be part of it?

Tara 17:49 Yeah. It's because it's not getting because of that the blood is not flowing the way that it needs to.

Lita T 17:55 Right.

Jean 17:56 And I guess most people don't think of their bones as first of all even needing a blood source.

Lita T 18:00 Yeah, yeah

Jean 18:01 but you don't realize that the osteocytes and, and everything inside your bone that you know that there's constant growth in bone and that it's still...

Tara 18:07 I know.

Jean 18:08 Yeah, because you think it's like set in stone. But really, it's, you know, part of your living

Lita T 18:14 body,

Jean 18:14 it's part of your body that's, you know, it's constantly

Lita T 18:16 most people don't think about it

Jean 18:17 regenerating, yeah.

Lita T 18:17 Right, right

Tara 18:19 It is. And a lot of people also kind of confused a vascular necrosis, which is also called osteonecrosis, but they confuse it with osteoporosis.

Lita T 18:30 Right, right

Tara 18:32 Like,

Jean 18:32 ohhhh,

Tara 18:32 Oh, they're like, you have

Ron 18:34 brittle bones?

Tara 18:34 osteoporosis. I'm like, it's not osteoporosis.

Lita T 18:37 No, no

Tara 18:39 It's osteonecrosis. And it's completely different. I went through that, initially, to once I found out that it was the a vascular necrosis, it was very challenging to explain to people actually, what it was, who had assumed that it was osteoperosis,

Ron 18:40 Right

Lita T 18:40 Different

Ron 18:40 Right, right you know, as we're talking, I just, it reminds me and this is going way back, when I was in college, I had done a paper on the banning of chemicals and Agent Orange.

Jean 19:14 Mhhmm

Ron 19:14 It was done like in the mid 70s, or something like that, because they knew it was bad. They just didn't know how bad

Jean 19:22 Mhhmm

Lita T 19:22 Oh Wow.

Ron 19:22 And this is where the stuff that we're talking about now is the result of all the research from that but way back in the 80s when I did this paper, they knew that this stuff was bad and that's why they said no more of these chemicals.

Jean 19:39 Well, it kind of reminds me of lead in fuel.

Ron 19:41 Mhhmm

Jean 19:42 And you know, like to prove that it was perfectly fine, which it's not the someone actually dipped their hands into it, and then later on, developed all sorts of cancers in both arms. But you know, like we I guess it takes time and research and, you know, you have to think about the effects down the road.

Ron 20:00 The long term Absolutely.

Jean 20:01 And it's not. Yeah, it's a challenge,

Lita T 20:03 right?

Tara 20:04 Yeah. And I remember reading somewhere that the amount of chemical that was used over there covered the span of I think it was like Kentucky and another state combined. And it was actually the the combination of the chemicals in Agent Orange. The thing is tcdd tetrachloride benzodioxine, dioxin tcdd. It's the chemical group of compounds named dioxins. And that's what makes Agent Orange as notorious as it is. And it's actually considered the most toxic of all dioxins, which is saying a lot, because dioxins are notoriously toxic. So, yeah, it's, um, I don't know, if you guys watched Chernobyl, that show?

Jean 21:01 I haven't seen that one yet. It's on my list.

Tara 21:03 Oh, I'm wondering how come they haven't done something like this for Agent Orange?

Jean 21:08 That's interesting

Tara 21:09 I'm like, yeah,

Jean 21:10 yeah. And I've been to see, oh, what has it done to the population?

Lita T 21:13 in Vietnam?

Jean 21:14 Yeah, in Vietnam? Because, um, you know, it's a long lasting chemical. And it's, yeah, it's got to have long term effects.

Lita T 21:22 Right.

Jean 21:22 Yeah. And then it's also in the environment at large.

Tara 21:25 Yep. And there is actually I've read a lot of things about the effects of the what's happening in Vietnam because of this. It's still being in the soil, so...

Jean 21:37 And, and there's probably, you know, if your going to have does have research and information, that's probably a good source as well, because they have a probably a greater population from the exposure. And actually, I think that takes us to Ron's question...

Ron 21:50 exactly. Can you tell us how common is a vascular necrosis? And actually, how is it treated?

Tara 22:00 Sure, so a vascular necrosis is probably anywhere from 10 to 20,000 people a year are diagnosed with it. So in order to be considered a rare disease, it's 200,000 or less avascular necrosis is 10, to 20,000.

Jean 22:20 Okay

Tara 22:20 So to treat a vascular necrosis and I need to give a plug here, because a lot of my information, Dr. Michael Mont, at Lenox Hill, who has, I was scheduled to have surgery on both knees, both hips in both shoulders in September of this time here, but due to COVID, and all of that, a couple of other mishaps, I actually kind of got sick with my lungs, too. We're postponing it, but he is phenomenal. He is a avascular necrosis guru, let me say that. So a lot of what I am speaking to is from literature that I've read that he wrote and talks about. So as far as treatments go for a vascular necrosis. As I mentioned earlier, a lot of people don't get a diagnosis until later in stage three, to give a little background on this, there is different staging, I guess, models that are used, there's ARCAT, then if you use the ARCAT, there's ARCO there's four stages, the first two stages are only identifiable on an MRI. So most people aren't going to be if you go to the doctor and you have knee pain or something they're not they're going to do an X ray. And when they don't see anything, it's like I don't, you're fine. Most, a lot of times, you don't go for an MRI for multiple reasons. So you don't get diagnosed until the pain progressed, and it gets really bad. Well, it's during those first two stages, where you have the less invasive procedures that are options that could help prolong you, possibly your bone completely dying and needing total replacements and it's becoming mobility issues, as well. So Another interesting fact here, too, and I'm kind of all over the board, but you know,

Lita T 24:29 yeah, you know, it turns out to be like a spider web, you know, one thing leads to another but go ahead and take your time.

Tara 24:35 I know avascular necrosis, there are a couple kind of well known people that had it A-Rod had it in his shoulder, Mike Napoli. Oh, the Red Sox play for the Red Sox, but theirs were caught. It was caught really early because they had to go through rigorous physical. So they had really high success. But I can't stress the importance of especially If somebody has history of Agent Orange, and they're having hip pain or something of that nature and their knees, hips or shoulders or something, especially if they have underlying health issues that prompts them to need prednisone or steroids, cause that contributes to that. It's like a perfect storm,

Lita T 25:24 okay

Tara 25:24 with the agent orange to cause a vascular necrosis. So did I answer your question?,

Lita T 25:32 Yeah that makes sense. That makes sense. Right?

Tara 25:35 I didn't finish answering the question though,

Lita T 25:37 no, that's okay. But at least that gives some background. Right. Right.

Tara 25:41 Okay,

Jean 25:42 well, yeah. And I think, you know, if you go to, you know, your orthopedist, and I don't think you know, is it typical for them to ask you? So did your parents, you know, serve in Vietnam? Are they exposed Agent Orange, it's, if it's not on their intake information, you really do have to advocate for yourself.

Lita T 25:58 Right? So the treatments again, the the initial treatments are, are what?

Tara 26:06 Okay, there you go. See, I didn't even answer it.

Ron 26:09 (Laughter)

Tara 26:09 So there's a there's, there's quite a few different treatments for the stage. And it's a little bit controversial, too, because, because it's rare, and most people don't get diagnosed until stage three and four. That means that there's not a lot of people to actually do tests that are trials on

Lita T 26:35 Oh Okay

Tara 26:35 stage one and two, or phase, the earlier stages. But very popular and somewhat controversial, depending on who you talk to is a core decompression, where they use bone marrow efforts that stem cells. So what accordi compression is, is they take and drill holes into your bone. And they inject stem cells into the bone marrow in hopes of regenerating the bone.

Lita T 27:10 Would they be your own stem cells?

Tara 27:12 Yes

Lita T 27:13 Okay?

Tara 27:13 Yeah, yes. But I also have for earlier stages. Do they also do PRP for protein rich? The

Lita T 27:21 plasma

Tara 27:22 stem cells?

Lita T 27:23 Okay. Okay.

Tara 27:25 But as far as treatment for the later stages, and that so.... So why I said it was controversial is because some orthopedist will say that, if you have a core decompression, you're kind of wasting your time, because it might buy you a little time, but you're still ultimately going, it's still going to collapse in the long run. And you're still going to have to go through all of the other things. So why even do the core de-compression?

Lita T 27:58 So it's just it's just a temporary

Jean 28:01 stop gap.

Lita T 28:01 A stop gap Yeah.

Ron 28:03 How much time?

Jean 28:04 Yeah,

Tara 28:06 it varies. And it's not always, that's not always the case, I had the bilateral hip core decompression in January of 2018. And I mean, I had tremendous relief after I did, and so far, like, it's, it hasn't gotten to the point to where I would need like to have it again. Like the pain hasn't gotten to that point to where it was before I had that surgery. So it's but there's other people who have had success and haven't had to go on and have any further surgery. So it's, it's not a, everyone will will have to it's there might be some that do and some that don't. And so the some that that do ultimately have to go on and have it that causes them to say that not to have it I don't know. So it is controversial.

Lita T 29:05 Okay

Tara 29:06 If you ask anybody, you'll get mixed reviews on whether you should or shouldn't. But the the guru, Dr. Michael Mont will tell you yes. To do the core compression, and I'm right there with him.

Lita T 29:18 Okay.

Tara 29:19 A majority of the time, I guess it depends there are things that so so let me just kind of say this. There's it depends on how much of the articular surface though, is covered with it has dead bones. Like if there's 75% or more, that has dead bone or if it's less light, so there's so many different, "if that, then that"

Lita T 29:47 Right, right.

Tara 29:48 And so

Lita T 29:48 like with cancer, you know, they treat cancer based on how much progression there is, are they going to use radio radiation or chemo? So I'm sure that they base it based on like, you're saying how bad it has progressed, right?

Tara 30:02 Correct, correct? Yeah. But that's for the first on the stage one and stage two, stage three and four get more complex.

Jean 30:14 Okay

Tara 30:14 So you have a variety of different options depending on, like I said, how much dead bone there is, as well as where it's at, where the dead bone is at. I have dead bone. It's 75% on one side, 85% on the other, my hip, and my knees are actually stage three. And my, my, my right, left shoulder is stage three, my right is stage two. And what that means is that some of the more less, the less invasive procedures, maybe don't have a high success possibility. It doesn't mean that it wouldn't possibly work, shall I say? Does that make sense?

Jean 31:04 It does, but is is like a replacement of the joint possibility.

Tara 31:15 Is the what I'm sorry,

Jean 31:16 can can they replace the joints?

Tara 31:19 Yes. But you wouldn't do that until stage later? Well, it depends on how much pain you're having to and a lot of it is derived by it by that. But yes, replacing it is an option. So and let me just explain this. This is the best explanation that somebody gave me on how to explain a vascular necrosis. So a vascular, a lot of people think that a vascular necrosis is like your joint. Something happened because you get a joint replacement. But what's happening is picture like whenever they lay of road, paver road, they lay sand down first and then they lay asphalt on top of it. But as you get a pothole, what happens is that sand settles and as the sand settles, then it pulls that asphalt down. So that's the same thing that's happening with the bone as the bone is dying because that's what a vascular necrosis is, is the bone dying as the dying is pulling down and that's what pulls your joint down and all of that, and it pulls all your ligaments and cartilage down and that's why you had to have all of it replaced.

Jean 32:35 So it's like sinkholes in the bone. Okay.

Tara 32:38 Yeah. Because your bones they're dying and they're, they're collapsing. And so as it does, it's taking everything with it.

Lita T 32:45 It's not just the not just the bone at the joint itself, but could it occur anywhere along the bone?

Tara 32:55 Yes, I I actually have it that called bone infarct, I have a vascular necrosis at the ends of my bones. And then I have bone infarct, which is dead bone patches throughout the long parts of my bones to which is where a lot of the the cancer that's where the cancer misdiagnosis came because it looks like that it shows up white in the images.

Lita T 33:25 Okay,

Tara 33:26 but yes,

Lita T 33:27 wow,

Jean 33:28 yeah,

Tara 33:28 for stage three and four, they have multiple different options, like there's an OATS procedure, a vascular graft procedure, ultimately, yes, a total replacement would be, I guess, that I want to say worst case scenario, but before the meet at that age, is a replacement for your hip would only last 10 years.

Jean 33:55 Okay, so they try to hold off.

Tara 33:56 Now it's actually lasting longer. Sometimes I think it's different if you have a vascular necrosis because the bones especially if they continue to kind of die after you've had the replacement,

Jean 34:09 right? Like after the bone isn't.

Lita T 34:12 Right.

Jean 34:13 Okay. I was just gonna say this, the shaft of the bone is supporting that joint. And so eventually, like, you'd have to place the shaft and the joint itself.

Lita T 34:20 Right So

Jean 34:21 and you're

Lita T 34:22 Why can't they get to the point where they're actually just solving the cause

Jean 34:27 the, stopping the necrosis.

Lita T 34:28 Right So in other words, like,

Jean 34:30 right,

Lita T 34:30 feeding the bone with the blood

Jean 34:32 Right,

Lita T 34:33 they can't. They can't come up with something where they can actually

Jean 34:36 I'm sure somebody's researching it somewhere. yeah.

Lita T 34:38 yeah,

Ron 34:38 Yep

Lita T 34:40 Wow.

Tara 34:40 Yeah. No,

Lita T 34:41 sorry.

Tara 34:41 Yeah.

Lita T 34:42 Yeah. Are they? I hate to interrupt you, Tara. But are there are there things that you could do to relieve the symptoms or improve your quality of life as you're going through this, you know, like as a person, not medical,

Jean 34:58 as an individual

Lita T 34:58 as an individual thank you

Jean 35:00 No I think, I think we do want medical.

Lita T 35:02 Okay. Alright

Tara 35:02 Yeah. Well, I can tell you. I can tell you from research that I did as far as exercise goes, low impacts. aquatics is really good.

Lita T 35:15 Okay,

Tara 35:15 yoga. Another good thing that I found actually has been tremendous for me. Is is keto.

Lita T 35:22 What is keto?

Tara 35:25 What I eat.

Lita T 35:26 Oh, I'm sorry. Okay. I thought it was a new. I thought it was like a karate. (laughter).

Jean 35:32 Okay, okay, stop.

Lita T 35:35 I'm sorry.

Tara 35:36 No. Keto. So one of the things of one of the challenges is, you know, with your bones, whenever you have a vascular necrosis, it makes it really challenging to be able to work out and get exercise or to go on a hike or things of that nature. Because it's kind of like a tire your bones are, the more you drive, the more your tire wears down. And so with avascular necrosis, it's the more that you walk, the more the bone collapses.

Lita T 36:05 Sure, sure. Right.

Tara 36:08 And so previous literature, I'd probably have to say and there might be some orthopedics that still recommend it, although I wouldn't. That say non weight bearing, like Don't, don't walk, try and limit your, your walking and as much as possible, because that will prolong the collapse. But what I found changing my eating too has allowed me to drop 36 pounds last year. And

Jean 36:37 congratulations,

Tara 36:38 when I wasn't able to work out and do those things that I used to love to do, like running. You know,

Jean 36:47 do you still run in your sleep in your dreams? Is that just me? .

Tara 36:52 You know what I do sometimes from from scary PTSD doctors that I've had from my experiences, but yeah, yes, I'm running.

Lita T 37:02 Okay. I'm sorry. Is it my turn?

Jean 37:05 Yeah, it's your turn

Lita T 37:06 Oh okay (laughter)

Jean 37:07 go fish.

Ron 37:07 Yeah.

Lita T 37:08 What? Tara, what role have your family and friends played in your health care journey?

Jean 37:13 Yeah. Especially your sister. Um,

Tara 37:17 okay. So, my family has been tremendous. Um, my dad and my mom have been my rock. I don't, I would not have been able to make it without them, which I'm not going to go into, like, my past or anything. But it's, it's different from how I grew up. You know, my dad was fighting his demons with the war. But now, he's, he's my rock. Luckily, with COVID because he was in a war veterans home for the past 17 years. And then COVID happened. And I found out that they weren't allowing their workers to wear masks. And so I had him. Oh, yeah. Yep.

Lita T 38:02 Oh!

Ron 38:02 What? Wow.

Tara 38:05 in April. Yeah, I have that recorded. But anyway, um,

Lita T 38:10 what state are you in? Oh, what state are you in?

Tara 38:13 I'm in Louisiana, Louisiana right now. So, um, I had him discharged. And so he's been able to be here with me. Although it's been extremely challenging with my stuff, but we've been able to support each other.

Lita T 38:31 Support each other Right.

Jean 38:32 And it's nice to meet your parents again, as adults,

Lita T 38:36 Yes

Jean 38:36 you know, to get to know them again. As an adult.

Tara 38:39 Yeah, exactly. Yes. And so it's been, um, my family has been amazing. is I don't even know how to say this and dance around it. I probably should have prepared better for that question.

Jean 38:57 You could leave in skip it, you can skip it

Tara 39:00 Okay,

Lita T 39:00 Whatever is comfortable for you. And if you want us to edit this out, we could also edit that part out

Jean 39:05 sure.

Tara 39:05 Okay, well, let me just say this. I fell into probably one of the darkest places of my life that I've ever been in. I am honestly lucky to be alive. There were days that I didn't know if I would make it if it wasn't my health, bringing me to the brink. My physical health, it was my mental health. And so every single relationship in my life was affected. I'm currently where we stand. My mom and my dad are my support system. And I'm rebuilding everything else.

Jean 39:44 Okay.

Lita T 39:45 Okay.

Ron 39:45 Gotcha

Lita T 39:46 All right.

Jean 39:47 Yeah. And I talk about mental health and physical health definitely go hand in hand.

Lita T 39:51 Yes, for sure. Definitely.

Tara 39:53 Absolutely. And when you're fighting for your life, you don't have like a lot of the energy to use On those relationships, so work on those.

Lita T 40:03 We understand that

Tara 40:03 And so everything is affected, you know,

Lita T 40:06 we understand that, yeah.

Jean 40:07 And you're in your friends and family have to be very understanding you're not able to do the things you used to do. And they really do have to make an effort.

Lita T 40:14 Right? Right.

Tara 40:15 Right

Lita T 40:15 And some people just can't really put themselves in the shoes of another person that has a chronic illness.

Tara 40:23 Right Yes

Lita T 40:24 And it's difficult. And, you might have to just excuse them and say, well, it's just not within their Yeah. purview

Jean 40:33 Purview?.

Tara 40:33 Yeah, wheelhouse

Lita T 40:35 right. Right. Right.

Ron 40:36 Look, this isn't really part of the script. But I'm just curious in you don't have to answer if you don't want to. Have you been able to see someone or talk to a therapist? Or?

Tara 40:47 Oh I have a yes. Yes,

Ron 40:50 Okay

Tara 40:50 I have. I've had a therapist for probably, like 10 years. Um, who? I call her my life coach, actually.

Jean 40:59 Sure. Sure.

Ron 41:00 Right

Tara 41:00 She's Wonderful.

Lita T 41:01 Yeah. Anybody with a chronic illness? It's causing pain on a non stop basis, I think, personally, should consider a therapist, Right I know,

Ron 41:11 but people look, view it differently. That's my opinion, But people dance around the question

Tara 41:11 Absolutely

Lita T 41:17 but personally, Yeah, yeah. My opinion is that it's needed.

Jean 41:20 Yeah.

Tara 41:20 Yeah, they're, they're such that there is still a stigma, in many ways about therapy and mental health. But honestly, there isn't, even if you don't think that you have a mental health, you know, reason to seek help. We all have things that we could improve on,

Lita T 41:39 Sure

Ron 41:39 Certainly

Tara 41:40

and why, you know, why wouldn't we want to?

Lita T 41:43 Right

Tara 41:43 That's exactly what a therapist would help you do? You know? So that's just my thoughts.

Jean 41:49 Oh absolutely

Ron 41:50 Some people have that thought of, these are my feelings I hate for anybody else to know what I'm feeling. I'll just deal with it internally.

Tara 41:59 Yeah.

Ron 41:59 And, you know, again, I mean, people look at it, people view it, people process it differently. I'm in total agreement with what Lita and Jean Marie and what you're saying about, it's great to talk with someone. But again, because of the stigma and all that a lot of times there's people out there that say, I don't want anybody,

Lita T 42:19 right,

Ron 42:20 know what's going on,

Jean 42:21 But it is coming into play in more. For example, like with organ transplant, getting counseling is not an option.

Ron 42:31 Right

Jean 42:31 It's a requirement,

Ron 42:32 right?

Jean 42:33 And because they realize that you really you, you need assistance, and you need some help.

Ron 42:37 Right

Jean 42:37 And it's a big deal. And I think the more and more we integrate health and take it in is part of the whole health package, the better it is for everyone.

Lita T 42:47 Right.

Jean 42:47 And this way it reduces that stigma

Lita T 42:48 better. If we would have started that way back when medicine started,

Jean 42:52 right,

Lita T 42:53 and said, mental health and physical health are hand in hand. And if you go to a doctor, and you're being seen for something that's chronic, I mean, if it's something that's that's short lived, and the doctor fixes you, there's probably but if it's chronic, I think that you should automatically say, well, because of this chronic illness, you automatically, you know, should go to

Jean 43:14 it should be included,

Lita T 43:14 right? It should be included.

Tara 43:16 Yep. No, I was just gonna say I think there needs to be like some type of chronic illness case manager, care manager, and whenever somebody is diagnosed, that they're referred to that person, and there's information that is given to them based especially based off of that condition, and it includes all of what you're saying. Absolutely

Lita T 43:34 right, right

Tara 43:35 because there is a huge gap, in many ways on in chronic illness, especially rare disease like that. I mean, it takes a good year for somebody just to get their bearings for any condition,

Lita T 43:52 right to process it

Tara 43:53 You want to make it a rare, a rare disease, and then that it adds to it because there's only a handful of people who actually have the knowledge that you need in order to find the treatment that you need. And oftentimes you have to travel extensively. I've had to travel across the country and figure out financially how you were going to afford it. I've had to get extremely creative. I found a lot of my doctors based off of research articles that I've read, because there wasn't actually an organization for my condition. So it there's so much that needs to be done in this this arena. But all of what you're saying would be great, too.

Lita T 44:37 Well, that leads me to my next question. Tara, what is the best advice that you've received for coping with a rare disease and what advice would you give to somebody recently diagnosed with a rare disease?

Tara 44:52 The best advice that I received was you have to be kind to yourself and take one day at a time and I know that That really, it really sounds cliche, because you hear, you know, one day at a time, but you get so exhausted, trying to just trying to find the most simplest thing. And all you want to do is like, just find the answers. And you can't even find an answer. That won't even get on people who are misdiagnosed. But it's really easy to get discouraged, and you beat yourself up over things. So I think that that was the best advice that I received for coping, and that to surround yourself with people who will help you see a side of you that you can't see,

Lita T 45:43 like to bring out the positive from you.

Tara 45:45 Yeah, well, that will remind you of the good in you because you're going to be struggling really hard. You're not going to feel like that person at all.

Lita T 45:54 Right. Good advice.

Ron 45:56 Yeah absolutely. Tara, how can our listeners learn more about you? And also about AVN? And do you have any, any social media accounts out there that you want to share with us?

Tara 46:11 Absolutely. Um, can I go back and answer the rest of the rest of that question though?

Lita T 46:17 Oh sure, go back, backtrack!

Tara 46:19 Okay. Okay. So, um, because what advice would I give to someone recently diagnosed with a rare disease is, I would say, research online to see if there's a nonprofit for that condition. One of the best places that I have found support is on social media support group. Facebook has so many support groups, and specifically about the a vascular necrosis support group. That's where Dr. Michael Mont, the one that the avascular necrosis guru, every two weeks, he goes on, he does a live q&a, invite anybody on that support group to participate and ask him any question that you want whatsoever?

Lita T 47:08 I love that

Tara 47:08 Send him your Yep, you can send him your, your, your discs, to look at it, develop a treatment plan for you do all of that for free? Like he is? Yeah, it's amazing. So for any rare disease, I don't know. I wish my other conditions had that type of interaction. But the a vascular necrosis support group does and it's amazing. So I would definitely start with support groups. Social media, look for the nonprofit, associated National Organization for rare disease Nord, is a place to start to, that will lead you to any nonprofits, potentially, to finding help. And another option is research articles. That's how I found a lot of the doctors that I've met and saw, but based off of who wrote the research article, though, but that was my advice.

Lita T 48:13 Okay, thank you. How can we learn more about you then?

Tara 48:17 More about me, I will, I will send you my social media contact information. And I am actually starting next weekend. I'm going to start documenting my journey.

Lita T 48:30 Oh good

Ron 48:30 Okay.

Lita T 48:31 like a blog.

Tara 48:31 Yep

Lita T 48:32 And a blog. Okay, great.

Tara 48:33 Yeah. Yeah. Yeah, on a blog.

Lita T 48:37 Excellent. We'll make sure that we put a link for that in our website.

Tara 48:40 Yes. Because I want to hopefully, share and hopefully I can help others that have maybe experienced the same things that I have. Even especially with the surgery that I'm going to have to have too

Lita T 48:54 To get ready for, great, excellent idea. Thank you very much. Well, Tara, thank you so much for taking the time to join us today. And we're looking forward to speaking with you in the future about the other issues that you're dealing with. So we'll be scheduling, we'll be scheduling other appointments for you in the future.

Tara 49:16 Great, and I'm like, I got my first podcast down and there's nowhere to go, only improve. Right

Ron 49:22 (laughter)

Tara 49:22 like I'm only gonna get much better.

Lita T 49:24 Yes,

Ron 49:25 Oh you did fine. Don't worry about it yet fine.

Lita T 49:28 We're gonna definitely

Tara 49:28 I didn't even

Lita T 49:31 we're gonna definitely be pushing this episode into our veterans network so that other veterans and children of veterans will be aware of this as well.

Tara 49:42 I'm going to too and that's why I was going to ask you guys for your social all your social media

Lita T 49:47 Sure yes

Tara 49:48 because I'd already created like the post and I want to post it and

Lita T 49:52 Great, great

Tara 49:53 report although although I'm really reluctant because I so I wrote down all my answer, like I've rehearsed it. A lot of what I said is not even on what I wrote.

Lita T 50:04 Okay, alright

Ron 50:06 Maybe we should do that

Lita T 50:07 (laughter)

Tara 50:07 I don't know what happened. I don't know what happened. And I'm like, what I wrote is probably like, a lot better than what I said. And I was like, Oh my God, why did you do that?

Lita T 50:16 It always goes that way? It always goes that way. The only reason we use a script is, well, I think it's because of me, I have early onset Alzheimer's. And if I don't have a script in front of me, I forget where we are. I forget who we're talking to, I forget quite a bit. So it keeps me focused. And I think it helps keep us from talking over each other. Because when there's three of us on this side of the microphone, talking to you, it kind of limits how much we're talking over each other. So it helps us

Jean 50:48 And I tend to ramble.

Tara 50:49 Okay

Lita T 50:51 (laughter)

Ron 50:51 And I guess I tend to interrupt.

Jean 50:53 Yeah.

Tara 50:56 So if I tell you that I had the script in front of me, will that scare you?

Lita T 51:00 No,

Ron 51:00 not at all

Jean 51:01 no, no, no.

Tara 51:02 Ok Cause I had it in front of me. And I still rambled and went off topic. And I'm like, and I didn't even do it. And I was like, Oh, my God,

Ron 51:09 You're all good.

Lita T 51:10 I'm glad you did, because it turned out wonderfully.

Ron 51:13 Yeah,

Lita T 51:13 Thank you very much.

Ron 51:14 And actually, we do appreciate you coming on the show this morning and sharing your story with us. Quite interesting to say the least.

Lita T 51:22 Oh yeah!

Ron 51:23 And I'm sure that all of our listeners out there, learned a lot from this episode.

Lita T 51:27 I learned a lot.

Jean 51:28 I did too!

Ron 51:28 And we're looking forward to having you come on in the future to talk about some of the other conditions that you had mentioned earlier.

Tara 51:36 Yeah. And I have like, so I have so much better documentation that I could provide?

Lita T 51:44 Well, you know, what you could do is you could send me those links through email.

Jean 51:48 We can add them to our Pinterest Page

Lita T 51:50 When I when I build the website, I don't know if you're aware of this, but you'll get your own page on our website. And then I put links for everything that you would like, on our on your website page. And this way people

Tara 52:03 Awesome!

Lita T 52:03 can go right there. Yes,

Jean 52:05 Yeah And then we'll have a Pinterest page for you as well. And it'll have direct links to any research that you'd like to cite or any documents or articles.

Lita T 52:13 Right, right.

Jean 52:16 Awesome, so good because I have all of those, like, I have the whole slew of medical, even research and citations and everything

Lita T 52:26 exactly

Tara 52:26 and even stuff about Agent Orange, so.

Lita T 52:28 Right Very important to include. Yeah,

Ron 52:32 right. Right, right. Okay, well, thank you again. If our listeners have any questions or comments related to today's show, they can contact us at podcast dx@yahoo.com through our website, podcast dx.com on Facebook, Twitter, Pinterest, or Instagram.

Jean 52:50 And if you have a moment to spare, please give us a review wherever you get your podcast. As always, please keep in mind that this podcast is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or a qualified healthcare provider with any questions you may have regarding medical condition or treatment before undertaking a new health care routine and never disregard professional medical advice or delay in seeking you because of something you've heard on this podcast.

Lita T 53:09 Till next week.

View Details

Jason is an engineering graduate who reinvented himself as a podcaster and chronic illness/disability advocate after developing fibromyalgia and postural orthostatic tachycardia syndrome (POTS). He is the host of Discomfort Zone, a podcast featuring immersive stories on chronic illness and disability that showcase our vulnerability, wellness, and resilience. He and his guests find comfort by turning towards discomfort, welcoming it, and laughing at it.

Jason is the youngest of three kids and the proud uncle of his nephew and niece. He was born and raised in Toronto, Canada where he currently lives with his Mom and Dad. On occasion, he helps with the dishes and does his own laundry. In his spare time, he can be found throwing grapes in the air, trying to catch them in his mouth, dropping them, dusting them off, and trying again.

s8e9 Fibromyalgia and POTs TRANSCRIPT

Lita T 00:08 Hello, and welcome to another episode of podcast dx, the show that brings you interviews with people just like you whose lives were forever changed by a medical diagnosis. I'm Lita, Ron is not with us today.

Jean 00:20 And I'm Jean Marie.

Lita T 00:21 Collectively, we're the hosts of podcast dx. And today's show, we're talking about Fibromyalgia, POTs and chronic fatigue syndrome with Jason Herterich. I hope I'm getting that right. He'll correct me in a minute (laughter) Jason is the host of a podcast called "The Discomfort Zone", and co host of the podcast, "Invisible, Not Broken". He's joining us today from one of our favorite cities, Toronto. Hello, Jason. Thanks for joining us today.

Jason 00:35 You are Yeah, thank you so much for having me. I've been looking forward to this.

Jean 00:56 Thanks. Yeah, actually, I just saw Margaret Atwood was posted. She was cleaning up trash outside of her, you know, on along the street in Toronto. And it looked a little bit chilly.

Lita T 01:08 Yeah, it's it's chilly here too.

Jason 01:11 It sure is.

Jean 01:12 Well, Jason, before we get into your diagnosis, and that, I'm just curious what led you to hosting your own podcast.

Jason 01:20 So it was really organic, how it happened, I had fallen really ill in 2016 and 2017. And one of my friends just suggested that I should get into listening to podcasts, I had become very, very ill. And I spent about 22 hours a day in bed. And I couldn't even handle looking at a TV screen,

Jean 01:42 Mhhmm

Jason 01:42 because I had such severe headaches. And so naturally, podcasts you don't have to look at, you can shut your eyes, you can just listen to them, you can tune out for a little bit. And I got really, really into storytelling podcasts especially. And they they were really wonderful in the way that they help expand. Essentially, they allow you to empathize with people at a much deeper level. And I really loved that aspect of it. But I realized that there weren't, there was a very low representation of people who are chronically ill, and disabled in storytelling podcasts. So I just sought to create my own. So I got into so I started in 2017, after I started to recover, and I started producing stories about my own chronic illness experience. And I tried to make them just very immersive stories using sound design music and sound effects and everything to really try and engage as many people as possible. And so I've been doing that ever since.

Jean 02:46 That's fantastic

Lita T 02:47 Yeah, sounds great.

Jean 02:48 And what are some of your favorite podcasts at the moment?

Jason 02:51 Oh, yeah, I got a whole ton of I got a whole ton right here. Um, yeah, one of my favorite recently has been "Your Hustle". It is Have you guys heard of that before?

Jean 03:01 I, I. ehh... it sounds familiar.

Jason 03:04 Yeah, so it's a podcast that is produced within the walls of San Quentin penitentiary in California. And I don't know about you. But before whenever I think of inmates, they're often depicted as scary criminals who are devoid of any remorse. But really, when you get to hear their stories, you just get to understand them at a deeper level to empathize with them. And it really leaves you with this feeling that anyone is capable of rehabilitation. So that is one of them. Another one that have been hooked on lately "Unlocking Bryson's Brain". And it is a story of a Canadian man who takes listeners inside his family search for a diagnosis, treatment and cure to his son's rare brain disease. So yeah, it's it's really fascinating as like, this really incredible mix of storytelling, medical mystery, disability rights, and gene editing science. And then And then lastly, "How To Be A Girl" is a documentary of a mother raising her transgender daughter. So yeah, just just to keep this brief. At the age of three, her child told her that there was a mistake in her tummy that and that she should have come out as a girl.

Lita T 04:23 Oh wow!

Jason 04:24 So it just yeah, it navigates there. As the girl gets older, she starts going through school playdates. And when the mom has romantic relationships, so they just have very raw conversations. And I think the daughter is is my favorite part of it. It just really goes to show how incredibly wise children can be.

Lita T 04:49 That's amazing.

Jean 04:50 Yeah, those will be adding those three to our list.

Lita T 04:52 Oh, for sure.

Jean 04:54 Yeah.

Lita T 04:54 I love that.

Jason 04:55 Yeah I couldn't, I couldn't recommend them. highly enough.

Lita T 04:58 Love it. Jason, how do you balance living with a chronic illness? Actually several chronic illnesses and hosting your own podcast?

Jason 05:09 Yeah, it's it's an ongoing struggle. What has been most helpful for me is I try to make active decisions throughout the day. So I will leave alarms on my phone to just remind me to pause, whatever I'm doing consciously think about what I will do next and check in with my body see, like, do I need to take a break? Should I go out for a walk? Am I having trouble concentrating? Because usually, that's a sign that my symptoms are starting to kick in? Or, you know, do I have any obligations later in the day that I need to reserve spoons for? So really, it's an ongoing process? I try to get a little bit better at it over time. But yeah, I'm not perfect. (laughter)

Lita T 05:58 Yeah, I can.... I can understand that,

Jason 05:58 it's something that... I continue to struggle with.

Lita T 06:00 yeah, I do the same thing with I use my phone a lot. I have early onset Alzheimer's. And I use my phone constantly to, to remind me to do things. And just to keep me in check and make sure that the day is going smoothly. And I don't end up with anything surprising that really kind of goes be into a tailspin, basically.

Jason 06:25 Yeah, yeah. If you use too much early in the day, it can throw you off,

Lita T 06:29 right.

Jean 06:30 And we also use tech, we have watches that have a light diode that takes your pulse ox and pulse rate on a regular basis. And actually, it vibrates when you're starting when your stress levels are increasing. Or when you've been sedentary too long to kind of give you just that reminder, either to take a deep breath or go take a walk.

Lita T 06:50 You Right, right.

Jason 06:52 Wow, that's, that's actually incredible. I'm gonna have to get the name of that afterwards from you

Lita T 06:56 It's one of the Garmin, I know it's a Garmin, but there are several Garmin, we got it. Yeah, we'll put a link on that for our website,

Jean 07:04 or send you a message. Yep.

Lita T 07:05 Yep. So Jason, I understand that you've been diagnosed with several different really complicated and difficult diagnosis. Fibromyalgia in itself is rough. myalgic encephalitis horrible. And POT's, could you tell us what symptoms lead you to seeking out medical care?

Jason 07:27 Yeah, so this all started out just over nine years ago, it's wild to think it was so long ago, but I was a fourth year student at University studying engineering. And I was very, very active. At the time, I was a triathlete. And, you know, I was about to graduate and had my whole life ahead of me. And then one day during an intramural game of basketball, I caught a rebound, I twisted and pass the ball up court. And in that moment, I strained a muscle in my abdomen called, what is the name of it, intercostal, sorry, brain fog here. I strained my intercostal muscles, and they are muscles that are used for breathing. And so unlike if you break your arm, you can put it in a sling, and you let it recover, and it naturally gets better by itself. But with these muscles, it is really, really painful. And it is it's made even more complicated by the fact that you can't rest and recover from it,

Lita T 08:30 Cause you need to breathe. Right

Jason 08:32 Yeah, it's not easy to treat at all. And so essentially, I had to take a week off of school spent the entire time in bed. And when I went back to school, I was so far behind that, essentially what happened is I my stress levels were so high from having to work so hard. And my pain levels were already really high from the injury. And when you get pain and stress, the two just build on one another, you're more stressed out because you're in pain and you're in more pain, because you're stressed out. So it creates this positive feedback loop. And so over time, my brain just became sensitized to pain. And I as a result as well, I'm not getting any restorative sleep, so I'm just tired all the time. And so it was something I sought medical care for quite a while ago, but it wasn't until so. So the injury happened in 2011. I didn't receive a diagnosis until like 2014. And so yeah, there at that point, they were really really debilitating symptoms.

Jean 09:40 I'm sorry to hear that.

Lita T 09:40 And was that basically the Fibromyalgia that kicked in at that point?

Jason 09:45 Yeah, it was fibromyalgia and myalgic encephalomyelitis as well. I don't think at that point. My POTs symptoms had begun showing themselves my POTs symptoms. I started to I believe, later on in 2015 is when I started I get dizzy and all that. And yeah, it's it's one of those things where I know a lot of these chronic conditions are interconnected. So you catch one, you're more likely to catch another, and, and so on.

Jean 10:13 And so I think because of all the overlapping symptoms, it's hard to get a differential diagnosis. And establish that.

Jason 10:21 Yeah, yeah. Makes it a lot harder

Jean 10:24 and, and you said it took a while to get that diagnosis. What were some of the tests associated with that? And I hear you have a tilt table story for us?

Jason 10:33 I do. Yeah. So I was just very dizzy all the time. And I would find that my heart raced whenever I stood up. And so one day when I was in my neurologists office, he did a quick check. So for your listeners, POTs is characterized by a heart rate increase of 30 beats per minute when you go from lying to standing up. So this was something that my neurologist did a quick check in his office, and I tested positive and this in that test in 2015. And so he referred me for a more comprehensive test called the tilt table test, where essentially, they tap they strap you to a table. And it's, it's slowly adjust from horizontal to vertical. And at that point, my symptoms were very severe when I got in, it was 2016. And just simply lying on the table put me in debilitating pain, even before the test began. I believe my heart rate was around 100 beats per minute, before it even started when Usually, it's around 60. And so they that we started the test, but it's supposed to be a 45 minute test. But 15 minutes in, I was just in such debilitating pain just from being uncomfortable on the board that they actually had to stop the entire test. And I just thought that it was going to be an inconclusive results.

Lita T 12:01 Mhhmm

Jason 12:01 But they ended up sending a report back to my doctor saying that I tested negative for it.

Lita T 12:09 Oh?

Jason 12:09 Which, to me is

Jean 12:10 Not quite the same thing.

Lita T 12:12 Yeah. Yeah.

Jason 12:13 It didn't seem right. And I pleaded with the doctor, you know, I said, I explained to him how they had to stop the test early and how my symptoms had gone haywire before they even started the test. But my neurologist, kind of just discounted what I had said, and he accepted the results. And he completely ignored me. And I think I yeah, I believe anyways, it was only a few months ago, or earlier this year, when I just simply redid that very first test when you just simply go from lying to standing up. And I had the heart rate increase. And a new doctor that I've been seeing a cardiac specialist told me that I do in fact have POTs. So I guess the moral of that entire story was that I I guess, I guess the issue was like the rigidity of the medical system and not stressing the importance of the patient voice there, it was very clear to me that there was systematic error within the test that made the results completely meaningless.

Jean 13:17 I'm sorry to hear that. I also had a tilt table test. And the technician that was performing my test to get me at a baseline for them to start actually was telling me very interesting stories and trying to keep my mind off the fact that we were there for because I think even going in for their test because it it can be a stressful process. And it is like a disconcerting kind of activity to be going through. A good technician is worth their weight in gold because they can try to keep your mind off the fact that you're there for that test and

Lita T 13:57 and she was in pain because

Jean 13:59 right

Lita T 13:59 we had just flown out to California to Stanford for the test and on the landing or just

Jean 14:06 some luggage hit me in the head. It wasn't a big deal

Lita T 14:08 just prior to landing the the flight attendant open the hatch on top, from where she was sitting and luggage fell out and hit her. And she had already had a neck and a head injury. So but she was tense. Let's say

Jason 14:10 Ouch!

Jean 14:23 But it's vital

Lita T 14:24 she was tense.

Jean 14:25 I think it just shows how important every individual in the medical system is

Lita T 14:29 right

Jean 14:30 And how much of an eff... you know how much they can

Lita T 14:32 put you to ease

Jean 14:33 Yeah, they can put you at ease and it takes someone who really cares about the person, you know, to accomplish that and I think we need more people out there that actually care about people and it does it makes a significant difference.

Lita T 14:46 I'm hoping that all of the future medical people in the world are listening to this podcast

Jean 14:50 we do have a lot of medical students listening

Lita T 14:52 Yes, pay attention to your patient

Jason 14:55 Yes that really is important. Yeah, paying attention to the to the To the individual not just simply seeing them as as a patient. And yeah, I think I believe I've heard the term white coat syndrome.

Lita T 15:10 Uhhuuh

Jason 15:10 My mom was telling me how she always used to test really high on blood pressure tests. Whenever she was in the in the, to see her doctor, and that was simply because just the fact that she was getting it tested would always just stress her out.

Lita T 15:25 Right

Jean 15:26 And it, Yeah. So if you have someone that puts you at ease that that can be very helpful, but inconclusive or incomplete test is not a you know, a completed testing.

Lita T 15:35 No. Right.

Jean 15:36 Sorry that you had to go through that.

Lita T 15:37 Right. Well, I'm glad you finally got it, sorted out.

Jean 15:40 Thank goodness, you know, you advocated for yourself, and were able to find a physician that would listen to you as well.

Lita T 15:45 That's important. Well, I'm not sure if there are misconceptions about POTs. But what would what do you think the most common misconceptions about Fibromyalgia are?

Jason 15:56 I would say that it's all in our heads. I have heard, I've heard that many times. I think that people who are not familiar with chronic illness, have a tendency to discount other people's suffering and their pain and their fatigue levels, simply because it's invisible. And and I think so many people have it in their heads that they just have it in their heads what somebody will look like who is suffering, they mistake what they're familiar with, as acute pain, where it's this very intense feeling. And people are gritting their teeth, with chronic pain, which is something that people have adapted to living with over years and years. And we still experience it all the time. But we're not necessarily showing it. We simply learned to internalize it, and try to focus on how we can best live with it. And then one other big misconception with fibromyalgia. I think a lot of people see it, and a lot of doctors actually think it only affects women. It is predominantly women, but men can develop Fibromyalgia as well. And I'm living proof of that.

Lita T 17:12 Right right

Jean 17:12 Yeah, we have interviewed other other men with fibromyalgia. And we were kind of shocked to hear that. That's the that's a popular misconception,

Lita T 17:22 right

Jean 17:23 Because I never imagined you know, that that would be something that would affect. Yeah, but okay. I have two questions for you. How are you currently being treated? And are your conditions? Is there a in the future? You know, do they anticipate that these are things that can be like, Is there a cure out there in the future?

Jason 17:42 Yeah, so in terms of being treated, I know it's different for everybody. But what I have found most effective is simply a self treatment plan. So for me, I focus on eating a good diet, lots of vegetables and fruit. I getting the right medication for me that that took many years to find the right one for me, mind being amitriptyline. Everybody, things work differently for everybody. And then also incorporating some mindfulness where I just work, breathing, paying attention to my body sensations, tuning into my body throughout the day. And then, for me movement as well. That's been really huge. For a while I was doing Tai Chi, and I was even doing a waterbase tai chi, they had a program down at the hospital, I went to where we got to go through all the movements in this group atmosphere. And I found that really empowering as well. Just knowing that other you're in the pool with other people with chronic illness, and you're all going through the same thing together. So yeah, just overall that and having a good sleep hygiene, I turned off all my devices an hour or two before bed every single night and I try to just relax, I will even turn off all the lights in my on my floor and just have candlelight so that I can help relax my mind.

Lita T 19:09 Well that's good

Jason 19:10 So those are Yeah, those are the main treatment plans. And then in terms of fibromyalgia, Fibromyalgia being curable. I know that a small portion of patients do experience full remission. I don't personally focus on curing my illness, it would be really nice if it happened. But I remember my occupational therapist, one once told me not to make dead people goals and dead people can't feel any pain. So I can't if I can't fully control how my pain levels are I try to focus on what I can influence and work to be coming. I guess just work towards improving functionality. And then I've generally found that when my functionality does improve that my pain level usually follow suits as well.

Jean 20:02 That's fantastic.

Lita T 20:02 Yeah, that's good...

Jean 20:03 that's very inspiring.

Lita T 20:04 Right Right, for sure.

Jason 20:05 Thank you.

Lita T 20:07 Do you have any advice for someone that has been recently diagnosed with a chronic illness?

Jason 20:12 Yeah, I think finding your social support system is really, really key. For anyone with a chronic illness, it can be very, very isolating. I think a lot of us who are chronically ill have friends drop out of our lives for whatever reason. It's not personal, it's not a reflection of you. And I've just found that it's best to focus on whoever has stayed. And just let them know regularly how much their support means to you and get involved with the online community I found that can be helpful as well.

Lita T 20:48 Well, that's good advice.

Jean 20:49 Yeah. And it sounds like you've established a really nice rapport with everyone in your podcast network as well. And you guys have a, you know, a great group there and produce some really quality podcasts.

Jason 21:03 Yeah, that's been wonderful. Just connecting with so many people connecting with listeners hearing from them. Yeah.

Jean 21:09 And what other role have your friends and family taken over the course of this journey? I know your parents have been very important to you, right?

Jason 21:18 Yeah, they've been super

Jean 21:19 it was a very leading question.

Lita T 21:21 (laughter)

Jason 21:21 Yeah, yeah. they've they've been huge. My parents. Now I fell very ill, as I mentioned earlier, around 2016. And around that time, I didn't have the ability to even take care of all my medical stuff, like getting prepared for appointments, keeping track of all that stuff, going to pick up all my medication, doing my research on all the different medications or the different tests that I was being sent for. So really, my mom ended up handling, essentially, all of that, in addition to being my full time caregivers for a couple of years, and I mean, even now, I've improved quite a bit. But even now, I have to rely on them quite a bit for meal preparation and other tasks, when I'm not able to handle them myself. And then, in terms of friends, oh, sorry, I should also just mention my I've got a lot of other family members who have been really great, especially my sister, Lisa, she's been amazing and always checked in on me whenever I was really feeling down. And then in terms of friends. I, yeah, I am incredibly blessed in that area too, in that when I was really sick. And there's a period of about eight months where I didn't, I only left bed very infrequently, and was very, very depressed, had thoughts of suicidal ideation, and all that. And there wasn't a span of time of more than two days, when I didn't get a visitor coming by, to just check in on me, and to come hang out with me. It's not the most exciting thing for my friends to come and do and, and sit by my bedside. And often I would barely even be able to contribute to the conversation, it would be them mostly doing most of the talking. So they were really my lifeline. And they were a huge reason why I was able to keep going and until I was able to receive the proper supports to allow me to recover.

Lita T 23:31 That's excellent.

Jean 23:32 Yeah that's, that's wonderful. I'm glad that you have those people in your life and that they've been so supportive. Jason, with the pandemic and everything that's been going on, you said you used to, you know, be able to go to the gym at the hospital. How have How have things change over the course of the past year? And what modifications Have you made to, you know, still stay active and do things? And, you know, in keep in contact with friends and family, when everything has been in lockdown?

Jason 24:01 Yeah, it's been a lot harder. I've been doing zoom like a lot of other people for keeping in touch with people, for just keeping in touch with friends, but I do get zoom fatigue like everybody else, probably quicker than everybody else just due to having headaches and everything. Yeah, in terms of what else? I've been lots of phone calls. I've been doing social distance walks where I'll meet up with friends and we'll just all walk six feet away from each other

Jean 24:33 (giggle) Okay

Jason 24:33 six feet or more.

Jean 24:34 Okay.

Jason 24:35 And that's been a really good way to just keep in touch while also getting some exercise getting some fresh air. Yeah, not being able to go to the pool has been kind of tough. That's one of the things I really miss. That was a huge part of remaining social and, and all that and remaining active as well. And yeah, yeah, I've been fortunate I mean, I'm in Toronto here. For a good part of the pandemic, I have been able to have a small social circle. So I've had my brother, his wife and their kids within our social circle. And so yeah, being able to hang out with like a three year old and a two year old as they always make you feel young, and that is really improved my spirits.

Jean 25:24 Yeah, there, children can be, and and pets and everything can be a great distraction.

Lita T 25:28 Wait a minute, children and pets, you can't ball them up in the same thing.

Jean 25:32 Well we do chicken therapy, where we go to see the chickens,

Lita T 25:35 yeah we do, we do

Jean 25:36 nothing makes you laugh harder than watching, you know, chickens fight over a tomato, because it kind of looks like you know, some sort of weird horror movie and yeah, okay.

Lita T 25:45 (laughter)

Jean 25:46 Okay, sorry, I'm, we're getting way off topic.

Lita T 25:48 (laughter)

Jean 25:50 Jason, what additional advice or tips do you have for our listeners.

Jason 25:54 So, I would say, to just do your best job advocating for yourself. Or if you can't find a family member or friends who can, or friends who can, our medical system isn't... that the chronically ill often fall through the cracks of our medical system. So unfortunately, you do need to do some of that work yourself in terms of do your research before appointments, come prepared to every appointment with a summary of your recent medical history, and any questions you have for your doctors and any potential tests that you'd like to request. So you really have to become your own advocate there. And another thing is just find something that makes you happy, I know that our lives don't look the same way that they did prior to becoming ill. But it doesn't mean that I guess over time, we can develop the ability to adapt and find joy in different ways that we never could have imagined before becoming chronically ill. So yeah, find whatever, do whatever makes you happy.

Lita T 27:08 That's great.

Jean 27:09 Yeah wonderful advice

Lita T 27:10 right. Have you always lived in Canada?

Jason 27:14 I always have. Yeah,

Jean 27:15 You can hear from his accent

Jason 27:16 I live with my parents.

Lita T 27:17 No, no, I was just curious. Because, you know, like, now we're kind of comparing apples and oranges, you know, the medical system in the United States compared to the medical system in Canada. And I think that we have the same problems here. And it is very important to always go to your doctor's office prepared. And like you're saying, do your research ahead of time. Because you know, you go to a doctor's office nowadays, and you're given like a minute and a half,

Jason 27:44 Yeah

Lita T 27:44 you know, you don't have a lot of screen time with your doctor.

Jason 27:47 Yes

Lita T 27:47 So you have more you can do ahead of time, the better.

Jason 27:51 Yeah, and I've noticed that doctors really appreciate it when you can give them like a 30 second briefing on everything that's happened with with your health, since they've last seen you it's a way for them to digest everything really quickly, and then be more efficient with your time. So I think that they really appreciate it as well.

Lita T 28:11 Right. Right. That That could be a career field.

Jean 28:14 Well, and I think

Lita T 28:15 No, I mean, like just just in order to teach people how to go to the doctor,

Jean 28:20 right? Well, maybe it could be included in your high school health class.

Lita T 28:24 Right. Okay. (laughter)

Jean 28:25 And I think nowadays, a lot of technology can also come into play where you can track your, you know, your headaches, and you can track your symptoms, and you can actually give your your physician or healthcare provider an actual, you know, a synopsis and a screenshot of what is actually happening with you on a day to day basis, because when it is a chronic illness, I think it's hard to quantify it. And I think

Jason 28:34 Yeah,

Jean 28:48 and things can help.

Jason 28:50 I think that stuff is is so great, too. And I've noticed, I noticed that before I started doing any of this, like tracking my medical history, I would go into an appointment. And so often, it would depend what I would say to the doctor would depend on how my day was going. If I was feeling depressed that day, it would just seem like everything is so completely bleak. And I would send that message to the doctor, whereas like, they would get a much more accurate depiction of what my recent medical history was if I was able to Yeah, like as you were saying, go in with any kind of metrics or anything that you've been tracking over time.

Lita T 29:26 Sure, sure. Well, Jason, how can our listeners learn more about you and your podcast?

Jason 29:33 Well, they can listen to my podcast "Discomfort Zone" on whichever podcast app they use. They can also go to "Invisible Not Broken dot com" to find my podcast, as well as all the other shows in our network and you can find me on social media. My handle is D Zone Podcast.

Lita T 29:52 Okay, excellent.

Jean 29:53 And you guys have a wonderful website and a well rounded collection of podcasts. So we're very impressed. And we're hoping to one day grow up and be more like you. (Eh Ha!) Maybe? (laughter) Well, at least

Jason 30:06 You guys are great the way you are.

Lita T 30:08 At least we're staying active.

Jean 30:09 Yeah. Okay,

Lita T 30:10 mentally. (laughter) Well, Jason, thank you very much for taking the time to talk with us today.

Jean 30:15 Thank you, Jason.

Jason 30:17 Thank you so much for having me.

Lita T 30:18 You're welcome. If our listeners have any questions or comments related to today's show, they can contact us at podcast dx@yahoo.com through our website, podcast, dx.com and Facebook, Twitter, Pinterest, or Instagram.

Ron 30:32 Please keep in mind that this podcast is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition or treatment, and before undertaking a new health care regime, and never disregard professional medical advice or delay in taking it because it's something you've heard on this podcast

Jean 30:57 till next week.

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Kim Shields is 38 years old and just finished her masters in social work program. She was diagnosed with FOP at age 15, but it has mildly affected her throughout her life. She is a wheelchair user, but she doesn’t let that slow her down. She is working on a plan to open a nonprofit in the future to help with access issues for those with disabilities, specifically wheelchair access, but will fight to help anyone with a disability get access to housing, employment, and transportation that meets their individual needs to be as independent as possible.

__________________________________________________________________

Fibrodysplasia ossificans progressiva (FOP) is a very rare inherited connective tissue disorder characterized by the abnormal development of bone in areas of the body where bone is not normally present (heterotopic ossification), such as the ligaments, tendons, and skeletal muscles. Specifically, this disorder causes the body's skeletal muscles and soft connective tissues to undergo a metamorphosis, essentially a transformation into bone, progressively locking joints in place and making movement difficult or impossible. Patients with FOP have malformed big toes that are present at birth (congenital). Other skeletal malformations may occur. The abnormal episodic development of bone at multiple soft tissue sites frequently leads to stiffness in affected areas, limited movement, and eventual ankylosis (fusion) of affected joints (neck, back, shoulders, elbows, hips knees, wrists, ankles, jaw - often in that order).

Episodic flare-ups (inflammatory soft tissue swellings) of FOP usually begin during early childhood and progress throughout life. Most cases of FOP occur as the result of a sporadic new mutation and the genetic mutation that results in this disorder has been identified. FOP is caused by the mutation of a gene (ACVR1) in the bone morphogenetic protein (BMP) pathway, which is important during the formation of the skeleton in the embryo and the repair of the skeleton following birth.

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Board Certified in Family Medicine, Dr. Kelley was among the first physicians to become Board Certified in Integrative Medicine. She has studied the causes, effects, and treatments of Lyme Disease extensively, and lectures nationally on this and other topics.

Prior to founding Case Integrative Health, Dr. Kelley practiced medicine at WholeHealth Chicago, Michigan Avenue Immediate Care, and St. Joseph Hospital.

In the United States, some ticks carry pathogens that can cause human disease, including:

Anaplasmosis is transmitted to humans by tick bites primarily from the blacklegged tick (Ixodes scapularis) in the northeastern and upper midwestern U.S. and the western blacklegged tick (Ixodes pacificus) along the Pacific coast.
Babesiosis is caused by microscopic parasites that infect red blood cells. Most human cases of babesiosis in the U.S. are caused by Babesia microti. Babesia microti is transmitted by the blacklegged tick (Ixodes scapularis) and is found primarily in the northeast and upper midwest.
Borrelia mayonii infection has recently been described as a cause of illness in the upper midwestern United States. It has been found in blacklegged ticks (Ixodes scapularis) in Minnesota and Wisconsin. Borrelia mayonii is a new species and is the only species besides B. burgdorferi known to cause Lyme disease in North America.
Borrelia miyamotoi infection has recently been described as a cause of illness in the U.S. It is transmitted by the blacklegged tick (Ixodes scapularis) and has a range similar to that of Lyme disease.
Bourbon virus infection has been identified in a limited number patients in the Midwest and southern United States. At this time, we do not know if the virus might be found in other areas of the United States.
Colorado tick fever is caused by a virus transmitted by the Rocky Mountain wood tick (Dermacentor andersoni). It occurs in the the Rocky Mountain states at elevations of 4,000 to 10,500 feet.
Ehrlichiosis is transmitted to humans by the lone star tick (Ambylomma americanum), found primarily in the southcentral and eastern U.S.
Heartland virus cases have been identified in the Midwestern and southern United States. Studies suggest that Lone Star ticks can transmit the virus. It is unknown if the virus may be found in other areas of the U.S.
Lyme disease is transmitted by the blacklegged tick (Ixodes scapularis) in the northeastern U.S. and upper midwestern U.S. and the western blacklegged tick (Ixodes pacificus) along the Pacific coast.
Powassan disease is transmitted by the blacklegged tick (Ixodes scapularis) and the groundhog tick (Ixodes cookei). Cases have been reported primarily from northeastern states and the Great Lakes region.
Rickettsia parkeri rickettsiosis is transmitted to humans by the Gulf Coast tick (Amblyomma maculatum).
Rocky Mountain spotted fever (RMSF) is transmitted by the American dog tick (Dermacentor variabilis), Rocky Mountain wood tick (Dermacentor andersoni), and the brown dog tick (Rhipicephalus sangunineus) in the U.S. The brown dog tick and other tick species are associated with RMSF in Central and South America.
STARI (Southern tick-associated rash illness) is transmitted via bites from the lone star tick (Ambylomma americanum), found in the southeastern and eastern U.S.
Tickborne relapsing fever (TBRF) is transmitted to humans through the bite of infected soft ticks. TBRF has been reported in 15 states: Arizona, California, Colorado, Idaho, Kansas, Montana, Nevada, New Mexico, Ohio, Oklahoma, Oregon, Texas, Utah, Washington, and Wyoming and is associated with sleeping in rustic cabins and vacation homes.
Tularemia is transmitted to humans by the dog tick (Dermacentor variabilis), the wood tick (Dermacentor andersoni), and the lone star tick (Amblyomma americanum). Tularemia occurs throughout the U.S.
364D rickettsiosis (Rickettsia phillipi, proposed) is transmitted to humans by the Pacific Coast tick (Dermacentor occidentalis ticks). This is a new disease that has been found in California. (credits to the CDC for these links)

https://www.caseintegrativehealth.com/

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Talking today amongst ourselves, we will share some important safety tips around the home. (TRANSCRIPT BELOW)

Most home safety tips talk about the importance of preventing fires, preparing against extreme weather and protecting the home from potential burglars. If you are a homeowner and have not taken precautions in any of these areas, the time to act is now.

Yet even though it’s important to prepare for large dangers, most household dangers are more subtle and require smaller fixes. For example, did you know that a carbon monoxide detector is one of the most important tools in protecting against hidden dangers? It alerts homeowners to the presence of a deadly odorless and colorless gas. Without it, residents would never know to evacuate.

Luckily, complete home safety is easy to achieve with a few simple steps. There are many ways to protect yourself, your family and your home from common risks and dangers.

PodcastDx-S8E6-Household Safety

Lita T 00:10 Hello, and welcome to another episode of podcast dx, the show that brings you interviews with people just like you, whose lives were forever changed by a medical diagnosis. I'm Lita

Ron 00:21 And I'm Ron

Jean 00:22 and I'm ready for some figgy pudding.

Lita T 00:24 I don't know what it is,

Jean 00:26 How about sticky toffee pudding.

Lita T 00:27 OK, that's Jean Marie. Collectively, we're the hosts of podcast dx and today's show, we are talking about household safety

Jean 00:36 And when I think of household safety, I tend to think about very young people, or you know, babies and actually baby proofing something I've heard of that.

Ron 00:45 (slight snicker)

Jean 00:45 And then in one's home, as well as older adults, and well not really like adult proofing or senior proofing. But, you know, you get the idea.

Ron 00:56 Well, no matter what the age range happens to be in your household, there are always things that we can do to make our homes a safer place to live. And nowadays, work and learn as well. Universal, inclusive designs can make our home safer and more functional for everyone. We're today we're going to talk about a few modifications, which may actually make your home safer. And here's a tip, you may even be able to get assistance and or funding for your home safety upgrades and improvements through some of your local social and senior programs, nonprofit organizations such as Habitat for Humanity, or the International Red Cross and Crescent, maybe your local police and fire department or even your utility companies and such.

Lita T 01:46 Alright, I'm wondering if not the Red Cross Salvation Army, I wonder if they do anything.

Jean 01:53 But I know our local gas company will come out in and inspect your dryer and furnace and actually, there's programs here in Illinois, they will actually supply insulation,

Lita T 02:04 well we'll probably talk about that in the future

Jean 02:05 OK.

Lita T 02:07 Let's talk about let's start from the entrance of the home.

Jean 02:10 OK,

Lita T 02:11 we'll look like picture the home or the apartment or whatever. And we'll start at the entrance

Jean 02:16 OK

Lita T 02:16 so your entryway should be well lit at night.

Jean 02:20 mhhmm

Lita T 02:21 clear of debris. If your entry has stairs, you should take extra caution stairs can be a trip and fall hazard for anyone and are especially dangerous for older adults. The slightest variation is in a riser, which is the steps height or the tread depth, which is how far your foot we'll go into the step can greatly increase fall risks. Now, let me stop right there. If you have really big feet,

Ron 02:51 I thought we're stopping. (laughter)

Lita T 02:53 (laughter) OK.

Ron 02:54 Sorry, sorry,

Lita T 02:55 If you have a really large feet,

Jean 02:58 OK,

Lita T 02:58 then the tread depth. You know, there's a standard tread depth

Jean 03:03 There is a standard tread depth

Lita T 03:04 but it may not work for really large

Ron 03:07 right

Lita T 03:07 footed people,

Jean 03:08 but you're accustomed to a specific there are specific standards,

Lita T 03:13 right. So if you're kind of used to the specific standard, and then you come across a stair that's not to standard, it may cause you to fall

Jean 03:22 it. well, yeah

Lita T 03:23 There have been studies like the one by Mona Afifi, Belinda Park, and Mohamed Al-Hussein, titled "Integrated Approach for Older Adult Friendly Home Staircase Design", we'll have to put a link for that on our website,

Ron 03:39 yeah right

Lita T 03:39 which goes into great detail on how stairway design can affect safety.

Jean 03:45 And as this particular research article is often incorrectly cited by others online, we will, like you said include a direct link to it. And it's a compendium of specifics for stairways, because even like a 16th of an inch can cause someone to trip.

Lita T 04:03 Of course, I'm saying that but I'm not making a mark on it. So I'm not going to read my notes.

Jean 04:07 I have the article here to remind us.

Lita T 04:09 OK, good. Thank you.

Ron 04:11 One other thing that I'd like to add, though about the steps is It'd be great if you had a handrail because depending again, you mentioned like the size of your foot or what have you. But if you can securely grab a handrail that's going to help secure you more,

Lita T 04:28 Right, right.

Ron 04:30 So in general,

Lita T 04:30 I think there's a law, at least architecturally for if you have three or more stairs, you have to have a hand rail?

Jean 04:37 And yeah so but your local laws and codes vary,

Lita T 04:40 right

Jean 04:41 but it does behoove you to have one

Lita T 04:43 even with two stairs.

Ron 04:45 Right

Lita T 04:45 Even with two

Jean 04:46 even actually flat walkways in areas that can be icy or snowy ,

Lita T 04:50 Right, we've got one, right. So yes, Ron go ahead. Sorry. (laughter)

Ron 04:57 Again, it's just having a handrail is it's a safety precaution. You don't have to be older, whatever you just come over, you know, come off a surgery or something or whatever. It's just another safety feature that's all

Lita T 05:11 Yep

Jean 05:12 And you want to make sure that it's strong, secure and within hands reach.

Lita T 05:16 Right.

Ron 05:16 Yeah good point

Lita T 05:16 It should be in the right place. Yep. Yeah, you don't want it down like by your ankles.

Jean 05:21 I was thinking,

Lita T 05:22 (laughter)

Jean 05:22 if you have a very wide staircase.

Lita T 05:24 (laughter continues) OK,

Jean 05:25 you want to have a center rail as well?

Lita T 05:27 Oh, yes, that makes sense. Kim could have used that when she fell down the stairs

Jean 05:32 Well,

Lita T 05:32 at that theater.

Jean 05:33 She fell down the stairs at the theater because they were triangular steps. And those are the most likely to cause trips and falls.

Lita T 05:39 Oh, OK.

Ron 05:40 Yes it did!

Jean 05:40 and spiral staircases, yes it did.

Lita T 05:42 Yeah.

Jean 05:42 And she was trying to make sure that I was safe, which was extremely heartbreaking that, yeah

Lita T 05:47 well, alright, get back on the script.

Ron 05:49 (snickering laugh)

Lita T 05:49 If you happen to live in an area that has cold winter, like we do, you'll also want to make sure that your entry and walkways are free of ice and snow.

Ron 06:00 Right, right. And also, if you or someone in your household uses a wheelchair, you may want to have it professionally, a ramp professionally installed or a lift installed. But make sure that they do it by code.

Jean 06:16 Right, right.

Lita T 06:16 Good point. Yes. You don't just adlib on that. Because you're...

Ron 06:19 right

Lita T 06:20 …putting somebody is life in your hands. Whenever possible. Forget about scow, throw rugs, scow rugs?

Ron 06:26 (snicker)

Lita T 06:26 forget about throw rugs,

Ron 06:28 throw those rug away

Lita T 06:28 Throw those throw rugs away.

Ron 06:31 (laughter)

Lita T 06:31 The old dogs can be a tripping hazard and they should be avoided. And a throw rug is like a small little

Ron 06:38 area rug

Jean 06:30 area rug

Lita T 06:30 right? I call it a throw rug. Everybody calls it something different.

Ron 06:42 We're we're kind of near the same age range.

Lita T 06:45 Oh, I see. Yeah, some people call it area. If you do have a runner at your entrance, make sure that it's secure. And it will not shift when you walk in. And keep in mind that the slightest change in the level of flooring under foot may pose a tripping hazard

Jean 07:02 on to the kitchen.

Lita T 07:04 OK, and we're going to delete

Ron 07:05 the kitchen. That's a place that I'm not very familiar with. I'm getting though. But seriously in the kitchen, what we really mainly want to prevent are cuts and burns and fires and again slips and falls.

Jean 07:20 And actually also I guess I should have added poisoning.

Lita T 07:23 Oh, good point. OK, well to prevent cuts, make sure that your knives are sharp. Now this may sound counterintuitive,

Ron 07:31 (laughter)

Lita T 07:31 but Jean was Jean took professional cooking classes at le Cordon Bleu. And a doll knife may cause you to lose fingers because you're using more force when cutting and the blade may slip rather than cut whatever you're cutting, and then it'll slide right into your hand. Also use the right tool for the job. Don't use a knife as a can opener. Ron... (laughter)

Ron 07:59 (laughter) Have you been spying on me

Lita T 08:00 uhuhh. Use a can opener to open a can when using knives or other cutting implements, scissors Robo coups mandolins use a good cutting technique and form another safety tip don't throw sharp knives or other sharp objects into soapy depths of a dish pan or thow axes at a wall.

Ron 08:23 That's not..

Lita T 08:23 I've seen that that's

Ron 08:24 not on here.

Lita T 08:25 No, I know, I know but ..

Jean 08:26 keep axes out of the kitchen.

Lita T 08:28 (laughter)

Ron 08:29 Actually, can I mention one thing about knives, and this is something my forks and spoons and butter knives out like the butter knife. I'll put straight up when I do like a

Jean 08:31 yeah

Lita T 08:31 yes you mean in a like in a dishwasher?

Ron 08:41 Well not well in a dishwasher after I wash them to dry.

Lita T 08:44 Yeah,

Ron 08:45 the butter knife I'll go straight up. But if I'm doing like a steak knife, I put the point down because sometimes you put your arm over it or you scrape by it and again you're not gonna really hurt yourself with a butter knife

Lita T 08:55 Oh yeah, I always put I always put

Ron 08:57 right

Lita T 08:57 sharp points down

Ron 08:59 right

Lita T 08:59 just like my mother used to say when you're walking with scissors point down, same thing

Ron 09:03 right.

Lita T 09:04 I like to set my knives to the side of the sink and wash them one at a time.

Ron 09:09 OK.

Lita T 09:10 You'll want to store your knives safely

Jean 09:12 right that's what Ron was saying

Lita T 09:13 right? If you need to store them, like away from children or elderly that maybe may have Alzheimer's or have some type of another impairment or anything like that. You may want to store them in a locked drawer or cupboard to keep our cutting board from sliding around. We'd like to place a damp towel

Ron 09:32 Ohh!

Lita T 09:32 between the countertop and the cutting board

Ron 09:34 I like that.

Lita T 09:35 to keep it from shifting when cutting. Also, you may want to swap out your glassware or use silicone sleeves and your glassware to prevent broken glass in the home

Ron 09:47 that go around the outside so the cracks or breaks it doesn't shatter all over?

Jean 09:52 Right they actually make them too for insulin bottles.

Ron 09:54 Yeah,

Jean 09:55 because insulin is so expensive so they make silicone sleeves for it you can put in your insulin bottles.

Ron 09:59 OK

Jean 09:59 Yeah And now to help prevent fires, keep cooktops then hoods and ovens free of grease. You might hear about restaurant fires, that's often the culprit. And yeah, the grease can catch fire.

Lita T 10:11 We actually don't put paper nerdier stove.

Jean 10:14 Well I thought that was like a given...

Lita T 10:16 Well, you know, you know...

Jean 10:16 ...or drapery OK. OK. We like to toss the metal mesh filters for our cooktop vent into soapy water at least once a month. Because it's amazing how quickly grease can collect and those things in it. It's,

Ron 10:29 I never thought about that.

Jean 10:30 Oh, yeah, we bought when we were in North Carolina renting a house, the first thing I did was, you know, have the whole house cleaned. And I we looked up at the vent, and it was caked

Lita T 10:39 Coated, coated! With all this. I mean, you couldn't even... no. It wasn't even usable.

Jean 10:44 Yeah, it's good to check

Lita T 10:44 We threw those away. Yeah, (laughter) we got new ones

Jean 10:46 we got new ones.

Lita T 10:47 Yeah.

Jean 10:48 We also have small kitchen fire extinguisher. And if you do have fire in a pot or pan on the cooktop, you can usually smother the flame with the pot lid, or the pan lid rather than spraying it with a fire extinguisher that could actually spread the fire. Never leave anything cooking unattended never,

Lita T 11:06 never

Jean 11:06 never. And nowadays, there are actually devices that link your cooktop and your smoke alarm. So when the smoke alarm goes off, the electric or gas to your cooktop or range shuts off automatically. And there are also microwave ovens with preset time limits. Ours will only go up to six minutes. And this way, you don't accidentally turn on your microwave for let's say 90 minutes instead of 90 seconds like someone we know. And when it comes to smoke alarms in the kitchen, you may want to install a model that has a quick remote or Wi Fi reset.

Ron 11:38 Hmm. It sounds like some of the stuff you're talking about. It's art imitating life.

Lita T 11:44 Yes.

Jean 11:46 Well, it's anecdotal. We've actually had

Ron 11:48 Yeah,

Lita T 11:48 She's pointing at me.

Ron 11:49 (laughter)

Jean 11:49 Oh, well, she wasn't the one but yeah,

Ron 11:51 (laughter) OK.

Jean 11:51 We actually, you know, we've had house fires in our immediate family and they're they're very scary.

Ron 12:00 Yeah, yeah, absolutely. Thanks, Jean. Now let's talk about burns. It's generally best to keep the kitchen clear. pets, children, and even adults should keep the area around the oven, stove or cooktop and the path and path to the sink. Keep it clear. You don't want to burn anyone while removing a pot of pasta or anything from the cooktop to drain in the sink. And if possible, lock electric cooktops or secure the knobs for a gas cooktop and households were only certain members of the family can safely use it on their own. I just had an incident where a person with Alzheimer's turned the gas on

Jean 12:44 yep

Ron 12:44 and went back to bed.

Lita T 12:45 Right, right.

Jean 12:46 Yep,

Lita T 12:46 we take the knobs off.

Jean 12:48 Yeah. And now we just lock our

Ron 12:50 right

Jean 12:50 cooktop.

Ron 12:51 Make sure that you're cooking large volumes of food in small batches. That way it'll be easy to lift and will cook quicker. And if you're storing them for later, which also reduces the risk of food poisoning. Please use potholders as needed. OK. Practice picking up and moving cold dishes, pots and pans to get the feel.

Lita T 13:15 Oh, that's a good idea

Ron 13:16 well, rather than just sticking your hand on there and saying, Oh, that's hot.

Jean 13:19 Yeah yeah

Lita T 13:20 (laughter)

Ron 13:20 done that before.

Jean 13:21 Oh,

Ron 13:22 Unfortunately, I actually left a metal spoon in a pot.

Lita T 13:26 Ohhhhh,

Jean 13:27 yeah.

Ron 13:28 So I learned

Jean 13:30 note to self get Ron wooden spoons.

Ron 13:32 (laughter) This was a while ago

Lita T 13:32 (laughter) OK

Ron 13:34 and I've learned my lesson I like yes indeed.

Lita T 13:36 OK

Ron 13:38 And this next one may sound like an odd tip but here it goes.

Jean 13:43 OK,

Ron 13:44 the bent lip on a baking rack in the oven is a safety feature and should be at the back of the oven. What that does is it helps to prevent someone from pulling the oven rack all the way out accidentally. When you remove something from the oven, it's best to locate where you intend to place the hat item. Using potholders and making sure the area around the oven is clear. slowly pull out the oven rack, remove the item and place it on a trivet or

Jean 14:14 trivet yep

Ron 14:15 or heat proof surface they didn't think I knew that word.

Lita T 14:18 mmhmm good!

Ron 14:19 Then slide the rack back in reaching into the oven to remove the item. I'm sorry, reaching into the oven to remove items can actually lead to forearms and other burns.

Lita T 14:29 I've seen that before.

Jean 14:30 mhhmmm

Ron 14:31 Yeah. And if you do get a burn treat it immediately and consult a health care professional if needed.

Lita T 14:38 Good point. Things can get messy in the kitchen at least my kitchen.

Jean 14:42 (snicker)

Lita T 14:43 Take the time to clean up spills anything that you dropped on the floor especially to avoid crush injuries in the kitchen. Have your appliances secured with appliance straps to a wall stud. Pull down roll out or a pop up kitchen shelving can help everyone reach needed items without standing on a ladder or bending over kitchen faucets with a lever handle and a color. A clear color coded temperature indicator can help you from burning yourself. Right?

Jean 15:15 Sure yep

Lita T 15:15 setting it to the wrong temperature.

Jean 15:17 And I think "Little Chef Cade" has taught us all that everyone can help in the kitchen. It's a matter of finding the right task for every individual. And it's a it's great to have everyone safely pitch in with meal prep, even if they do occasionally eat all of the butter On to the bathroom!

Lita T 15:33 OK, well, I'm sure we've all heard that the bathroom is the most dangerous room of the house.

Ron 15:39 Uhhhh Yep,

Lita T 15:40 well, let's see if we can lower our odds for getting hurt in the bathroom.

Ron 15:45 OK, since there's water in the bathtub and a shower area, you should check to make sure that these areas have adequate drainage. You want to avoid water pooling and becoming a slip and fall hazard. Have grab bars, safety rails and poles professionally installed like we talked about with the railings. Especially where extra stability is needed and a lot of times has happened with older adults or people with disabilities etc, etc.

Jean 16:11 Yes

Ron 16:12 Having professionally installed a sink basin a towel rack, a shower door handle or toilet paper holder is not a substitute for grab bar. The grab bars need to be properly mounted and be able to bear one weight. A shower chair or seat can be helpful and improve bedtime safety when used properly. You may want to have a seat both in the shower and one just outside the shower. This way you can wash and dry yourself while still being seated. If you care for someone who needs help bathing, you need to stay with them. Never leave an infant or young child or anyone who requires assistance while bathing Do not leave them alone in the bath. Back and foot scrubbers a handheld long hose showerhead shower caddy to keep items within reach a handheld long hose showerhead.

Jean 17:06 Apparently that's very important. (laughter)

Lita T 17:08 (laughter)

Ron 17:11 I forgot to mention a tub spout cushion temperature gauges keep bath water between 98 and 100 degrees Fahrenheit that is and other bath tools can also be helpful and potentially improve bath safety. They can help reach hard to reach spots as well. Another thing make sure that the bath Tubs and Showers have a non slip surface. That's, I think probably huge

Jean 17:38 mmhhmm

Ron 17:38 for people out there. There are a number of products in the market to can improve traction to reduce the risk of falls in the bath or shower. And based on what I've read I'd like to make a controversial suggestion. please skip the water toys. In addition to potentially harboring bacteria, mold, viruses, fungus etc etc. Bat toys can also be a tripping hazard for people

Jean 18:04 Sure.

Ron 18:05 As with elsewhere in the home, the bathroom should be well lit floor should be kept dry and clear of clutter debris and anything that's potentially dangerous. Like cleaning chemicals, OK, keep them out of sight of children out of sight of everybody so that you know you use them when you need them. But they're not they're cluttering up the place. Any outlets, they should be GFCI or linked to a GFCI outlet. Toilet safety framed with grab bars and raise seats or overall toilet height may be good for some. When bearing down on the toilet. Some people may get dizzy or even pass out and If this is a concern, you may want to talk about improved safety when toileting with your healthcare provider. Also, maintaining proper ventilation in the bathroom also plays an important role in safety because moisture can facilitate mold and mildew growth. And that can be slippery

Jean 19:06 and gross

Ron 19:07 and gross is right. Use a contrasting color that can also help so that you know people can see where there's changes. Bright contrast and colors can also improve bathroom safety for those with visual impairments or dementia. rinse the shower pan and bathtub every time after bathing that can help reduce soap residue and biofilm built up which again can be slippery and dangerous

Jean 19:34 and gross.

Ron 19:35 Skip the bath oils and other products that can make the flooring slick. And if financially feasible and recommended by a health or safety advisor. You may want to think about installing a walk in bathtub or shower with little if any threshold. Yeah, that'd be great if you can.

Jean 19:54 Mhhmmm

Ron 19:54 And finally you may want to remove sliding doors for bathtubs and showers. The raised lip the track where the doors slide back and forth.

Jean 20:07 mhhmm mhhmm

Ron 20:07 The raised lip on the top of the shower pan may pose a tripping hazard for people.

Jean 20:11 In a more general note, there are many steps you can take to prevent household fires and improve your chances of surviving a household fire. Every home should have a working smoke detector, ideally hardwired with a battery backup, and if not, are any ways to replace the battery twice a year and store nine volt batteries in a separate container nine volt batteries stored in a junk drawer may actually ignite and cause fire.

Ron 20:35 Oh I never heard that. Oh wow

Jean 20:36 Oh yeah, no nine volts in the junk drawer. Test detectors on a regular basis, we'd like to test them twice a year. And occasionally, (distant barking) we have a chihuahua barking in the background. I'm very sorry about that. And make sure you have correctly placed and added in an adequate number of detectors. There's generally it's on the ceiling or on the wall. But make sure you check with your local code. And you want to have the adequate number for the size of your home. If you are unaware as to where to place the detectors or how many detectors you should have, contact your local fire department. And we've heard this many many many times before, especially from our you know friends in the fire department. If at all possible skip the candles. They're an unneeded hazard, and keep pathways and stairways clear at all times. If a fire breaks out, you'll want to be able to exit your home quickly and safely. And if you are a family member sleeps above or below the first floor or ground level, make sure that they have a means of egress. And a safe means by which to get to the ground level and practice that as well. bedrooms should have a window which is large enough for a firefighter wearing full gear to climb through. And you can check with your local fire department and building code for actual deep details as to what those measurements are, they might say that there's a standardized height and width that you have to meet. But it's not always the case that that's if you have one with a standard height and a standard width the that's large enough. I don't know if that makes sense, but check with them. And make sure everyone in your household knows how and when to use a fire extinguisher fire extinguishers should be properly located and inspected yearly. And primarily at exit doors you don't want to have to actually walk back into a fire to grab a fire extinguisher. And you can contact your local fire department to learn if they offer fire extinguisher training, as well as fire prevention classes and additional fire safety and prevention tips. If you've never used a fire extinguisher, it can be intimidating The first time you use it. So it's nice to actually know what that feels like. Make sure your electrical wiring wiring is up to code as well. If possible upgrade to ground fault circuit interrupters, and arc fault circuit interrupter outlets, as Ron was talking about they're very important with and it might help prevent electrical fires. Also, try not to overload your circuits and keep Transformers which are the little black boxes you'll see on a power cord for things like your laptop printer and other devices. Those should be kept cool.

Ron 21:28 mmhhmmm

Lita T 23:04 And the laptop should be kept cool.

Jean 23:07 And the laptop kept cool.

Lita T 23:09 And that's how Kim's fire started.

Jean 23:11 It was a transformer.

Lita T 23:12 Oh,

Jean 23:12 it was Transformers used to be in the laptop

Lita T 23:15 oh

Jean 23:15 in the printer underneath

Lita T 23:17 ok ok

Jean 23:17 so they didn't have enough ventilation to stay cool.

Lita T 23:20 sorry Take it back.

Jean 23:21 No, I would still say keep your laptop cool. And don't leave it on a bedspread

Lita T 23:24 Right

Jean 23:25 or a blanket or sofa.

Lita T 23:26 Right?

Jean 23:26 It doesn't allow for proper ventilation.

Lita T 23:28 A lot of kids do that.

Jean 23:29 I know it's dangerous.

Ron 23:30 Right

Jean 23:31 Yeah. And never cover up that transformer box it needs to

Lita T 23:37 breathe.

Jean 23:38 Well it doesn't

Lita T 23:39 pretend it needs to breathe.

Jean 23:40 OK, as I say it doesn't physically breathe.

Lita T 23:42 (laughter)

Jean 23:42 kind of creepy. Once electronic start breathing...

Lita T 23:45 (laughter)

Jean 23:46 ...we're all in trouble Just saying.

Lita T 23:48 (laughter) OK,

Jean 23:53 here's one more fire prevention tip register all new electronic devices. So if there's ever a recall, you will hopefully be notified. And if you are purchasing used electronic devices, check online and see if there has been a recall.

Ron 24:06 Let me let me add one more thing. We're talking about the fires. And in all of this, I think one key thing too, is for the family

Jean 24:14 mhhmm

Ron 24:14 to have a fire evacuation plan.

Lita T 24:16 Oh my gosh, absolutely!

Jean 24:16 Sure

Ron 24:17 So make sure that everybody...

Jean 24:19 knows where...

Ron 24:19 gets out of the house

Jean 24:20 right and knows where to meet.

Lita T 24:22 Absolutely

Ron 24:22 Exactly.

Jean 24:22 Yeah And actually we umm, we have trained Are we there was we had an unfortunate family incident where someone's pets did not make it out. But luckily all the people did

Lita T 24:32 but you can't train a cat.

Jean 24:34 I don't know if you can train a cat but

Lita T 24:35 you can't train a cat to come to eat.

Jean 24:37 OK.

Lita T 24:37 Oh, yeah, maybe

Jean 24:38 OK, well, we've trained our dogs, and if they hear a smoke alarm go off, be it in our house or on TV,

Lita T 24:46 (snicker)

Jean 24:47 they will immediately go

Lita T 24:48 run to the door.

Jean 24:49 to the door

Ron 24:49 Gotcha

Jean 24:49 So then we open the door and then we let him out

Ron 24:51 right

Jean 24:51 and we practice that as well.

Ron 24:52 Right. And that's the thing, not only to have one but to practice it

Jean 24:55 right. And also there's important things like being, crawling out,

Ron 24:58 right

Jean 24:58 you know, crawling Touching doors with the back of your hand, not the front of your hand,

Ron 25:02 right

Lita T 25:02 right

Jean 25:02 things of that nature. You want to practice and often fire departments will have a practice and setup that you can walk through.

Ron 25:09 right

Lita T 25:09 I know that Kim mentioned when her basement would caught fire, that she felt the heat

Jean 25:14 on her feet. yeah

Lita T 25:15 on her feet. As she was

Ron 25:16 oh wow

Lita T 25:16 walking across

Ron 25:17 right

Lita T 25:17 the kitchen floor.

Ron 25:17 wow

Lita T 25:17 From the basement

Jean 25:18 And that's another example of smoke detectors. There was one working smoke detector, the rest were still in the package waiting to be installed because she had just moved in

Ron 25:25 gotcha, so this in the new house?

Lita 25:27 No, this was... ...years ago

Jean 25:28 No years ago, when the kids were when the kids were little

Ron 25:31 gotcha

Lita T 25:32 so onto the laundry room?

Jean 25:33 onto the laundry room.

Ron 25:34 It was kind of digging what we were just talking about but yes, let's go on to the laundry room.

Lita T 25:38 (laughter)

Ron 25:39 Well, as with other areas in the home, where water and electricity may come together, make sure your outlet in the laundry room are also the GFCI and the fancy name escapes me right now. But

Jean 25:53 ground fault circuit interrupter

Ron 25:55 that one, check your lint trap and dryer exhaust system vent on a regular basis. And here's a tip too, because a lot of times people will pull out the lint trap and get the lint out of there.

Jean 26:08 mhhmm

Ron 26:09 But it's very narrow and it's hard to get

Lita T 26:13 it might be somewhere in the pipe. Right?

Ron 26:15 Yes. Well, yeah, first,

Jean 26:16 right.

Ron 26:17 So I mean, if you don't have the tool, try to get one or get with somebody who can come because cleaning the lint trap is very important. But there's still stuff that gathers underneath that

Jean 26:27 right

Ron 26:27 and that can also

Lita T 26:28 and birds make nests.

Jean 26:29 Yes. OK.

Lita T 26:30 on the outside

Jean 26:30 guys would read the script.

Lita T 26:32 OK, I'm sorry. (laughter)

Jean 26:32 Ummm

Lita T 26:34 (laughter)

Jean 26:34 we're gonna talk about that in a second.

Ron 26:36 I can talk about birds?

Lita T 26:37 Yeah.

Jean 26:38 But also there are professional services that will come out

Ron 26:41 right

Jean 26:41 and thoroughly clean it. And you could have that done twice here.

Lita T 26:43 Oh, I see. read the script.

Ron 26:45 Oh, yeah, right here. I've actually seen birds nesting in a dryer vent on the side of someone's house. wasn't mine. But I saw it.

Lita T 26:51 It was Kim's Kim has has a lot of problems with stuff

Jean 26:54 well, also in North Carolina.

Lita T 26:56 Oh, yeah. Yeah.

Jean 26:57 And what we first noticed was that our clothes weren't getting dry. And we were like, why aren't they getting dry. And then we looked on the outside of the house, and there was actually lint just falling out of the exterior vent. And then we looked across the street and they had a huge bird nest in theirs.

Ron 27:14 So I know we're kind of making a little light of this. But I mean, in all seriousness, we want everybody to be aware of this. And also just like all the other rooms. Please keep the laundry floor areas dry and clear of debris so that people don't fall

Jean 27:31 in onto the bedroom.

Lita T 27:32 OK,

Jean 27:32 as with all the other rooms in the bed in the home that the bedroom floor should be free of clear of clutter and debris. a nightlight under bed light or under nightstand lighting, or lights with motion sensors can make walking to the bathroom or other areas safer at night. Dressers nightstands, bookcases, televisions, etc. Should be anchored to a stud in the wall. And cords from window coverings should always be secured and out of the reach of children. Keep toys and other items within reach or locked away. You don't want to have them up on a high shelf or somebody is going to be reaching for them. beds, bed frames, and mattresses, and box springs all come in a dizzying array of options. If you've ever walked into a mattress store, it's amazing. When sitting on the edge of the bed, Your feet should be able to be squarely or squarely placed them on the floor and you're you're legs, your quads should your calves are not your calves. I don't know what I'm saying your thighs, your thighs.

Ron 27:47 (laughter)

Jean 27:55 Thank you, should be 90 degrees.

Lita T 28:26 So that bed that I got rid of

Jean 28:28 right

Lita T 28:28 that I had to take a running leap to get in

Jean 28:30 that was always funny, Yeah, but it was funny to watch.

Ron 28:32 did you have a little little like, trampoline?

Lita T 28:34 no, I just kind of ran and jumped up.

Jean 28:36 OK, so And yeah, so if a bed is too high or too low, it may pose a greater risk of falls, foam bumpers, concave mattresses and similar devices may be recommended for individuals who roll out or fall out of bed, check with your health care provider to find the safest option for you or your household, or members of your household. And for those who need to make frequent trips to the bathroom a portable commode may be the best option if you place it in the bedroom. So they don't have to walk as far

Lita T 29:03 right.

Jean 29:04 And there are other safety concerns. But we're gonna kind of gloss over this.

Lita T 29:08 Well, we could go on and on.

Jean 29:10 Right in although we can go on and on about household safety. I think we should call it a day

Lita T 29:14 It's a day,

Jean 29:15 if you any chemicals are kept out of the reach of those who may ingest them. Because poisoning is another

Lita T 29:21 Oh no, we talked about poisoning already.

Jean 29:22 I know. But I just want to say that that's another important thing. All right.

Ron 29:25 I want to thank everybody for listening and I hope to god they're still listening.

Lita T 29:30 Well, we kind of ran over the mill there.

Ron 29:33 But again, all kidding aside, I think you know we wanted to get pretty in depth about this because it is very serious.

Lita T 29:41 Right

Ron 29:41 But again, thank you to everybody for listening. If you have a question or comment related to today's show, please contact us at podcast dx@yahoo.com through our website, podcast dx.com and Facebook, Twitter, Pinterest or Instagram.

Jean 29:57 As always, please keep in mind that this podcast is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition or treatment before undertaking a new healthcare regime and never disregard professional medical advice or delay in seeking if it is something you've heard of this podcast

Lita T 30:14 Ohhhh! Till next week

View Details

Myostatin-related muscle hypertrophy is a rare condition characterized by reduced body fat and increased muscle size. Affected individuals have up to twice the usual amount of muscle mass in their bodies. They also tend to have increased muscle strength. This condition is not known to cause any medical problems, and affected individuals are intellectually normal. Myostatin-related muscle hypertrophy is caused by mutations in the MSTN gene. It follows an incomplete autosomal dominant pattern of inheritance.

In layman's terms:

Too LITTLE Myostatin causes too MUCH muscle.

Our guest today is discussing her son's condition where he has twice the normal myostatin in his body, and yet he has more muscle mass and less fat in his body than his peers! It is possible that he is the only living person with this particular disorder, thereby officially kicking off our "Rare-Diseases Segment" of PodcastDX.

Shari Graber knew, without a doubt, her son was special the day he was born. From her hospital bed, she saw her infant, only hours old, lift his head from his bassinet in the hospital room and look around the room! "No one would ever believe me" she thought to herself- and Dylan's life began with gusto! Listen to this week's episode to hear this incredible story!

(Pictured) Dylan, Mackenzie, Shari & Kevin Graber

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Basic disability etiquette involves treating people with disabilities with respect. For example, speak to the person directly, not to the person accompanying them. Do not make assumptions about what they can or cannot do. The impact of a specific disability can vary widely from person to person, so offer assistance only if it appears to be needed. Acknowledge and respect the individual’s ability to make decisions and judgments on their own behalf. Always use “people first” language. For example, use the term “people with disabilities.” Do not use terms such as “the disabled” or “the handicapped.” Avoid referring to people by their disability. For example, do not say, “She is an epileptic.” Instead, say, “She has epilepsy.” Do not say “wheelchair-bound” or “confined to a wheelchair.” Most wheelchair users perceive their wheelchair as liberating, not confining. Do say, “She uses a wheelchair.” Do not use negative, demeaning, and outdated terms such as “cripple,” “deaf and dumb,” or “retarded.” Be aware that many people with disabilities do not wish to be referred to euphemistically. So, avoid using terms such as “physically challenged,” or “differently abled.” Also, avoid referring to an individual with a disability as someone who is “suffering from cerebral palsy or Parkinson’s.” (credits: http://bit.ly/3aHH19z)

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Cerebral palsy is a group of disorders that affect movement and muscle tone or posture. It's caused by damage that occurs to the immature brain as it develops, most often before birth.

TRANSCRIPT:

S8E2 Cerebral palsy

Lita T 00:08

Hello, and welcome to another episode of podcast dx, the show that brings you interviews with people just like you, whose lives were forever changed by a medical diagnosis. I'm Lita

Ron 00:20

And I'm Ron.

Jean 00:21

And I'm Jean Marie.

Lita T 00:22

Collectively, we're the host of podcast dx. On today's show. We're speaking with Zain about cerebral palsy. Good morning, Zain. And could you tell us a little bit about yourself?

Zain 00:32

Sure. So, um, good morning. My name is Zain Bando And I am a 21 year old college student who's currently studying journalism at the University of Illinois in Champaign. And after graduation, um I hope to pursue a career in, in broadcasting or as a writer for a sports team. I don't know, I don't know what sports team that would be at. But it's something that I've always been interested in. And it's just a passion that I've always had, and I'm very glad to be pursuing it. So thank you again, for having me on today. I really appreciate it. And sorry, my, my pronunciation is actually "Zain", I know, I know that there's I in my name, but it actually isn't for now, literally. So if you think of the word "van", that's how my name is pronounced.

Lita T 01:18

We will take that that I out, thank you very much.

Ron 01:22

Yeah I don't know. We appreciate that. Zain. Can you send us out by actually telling us and our listeners what actually is? cerebral palsy?

Zain 01:33

Sure, so that's a great question. So according to the Mayo Clinic, cerebral palsy is a group of disorders that affect muscle control, movement, muscle tone, or posture, by injury or malformation, which occurs to the brain as it develops more often before birth during the birthing process, or just after birth. There are two main forms of CP, continental and acquired.

Lita T 01:58

Right, right that I've got also in the Center for Disease Control here in the United States. That the risk factors for cerebral palsy, and I'm going to abbreviate it as CP is that it's important to know the risk factors. Some of the risk factors for congenital CP are a low birth weight. So children who weigh less than five and a half pounds at birth, or that's 2500 grams, and especially those who weigh less than three pounds at birth, so that's about 1500 grams, they have a greater chance of having CP, a child that is prematurely born. And that's children that are born before the 37th week of pregnancy, and especially if they're born before the 32nd week of pregnancy, they have a higher chance of having CP intensive care for premature infants has improved a lot over the past several decades. And babies that are born very early are more likely to live now. But many have medical problems that can put them at risk for CP. Another risk factor is multiple births, twins, triplets, and other multiple births have a higher risk for CP, especially if a baby's twin or triplet dies before birth, or shortly after birth. I don't know why that would be but that's what they're saying. some but not all of this increased risk is due to the fact that children born from multiple pregnancies are often born early or with low birth weight, or both children that are conceived with artificial reproductive technology, abbreviated as ART in fertility treatments. Those pregnancies that result have a higher risk of CP. Most of the increased risk is explained by preterm delivery or multiple births or both. And both preterm delivery and multiple births are increased with children conceived with ART infertility treatments. Another risk would be infections that the mother might get during pregnancy infections can lead to increased certain proteins called Cytokines and that circulates in the brain and the blood of the baby during pregnancy. Cytokines cause inflammation, which can lead to brain damage in the baby. A fever in the mother during pregnancy or delivery can also cause this problem. Some types of infections that have been linked to CP include viruses such as chicken pox, rubella, German, which is also German measles, and also Sue-to

Jean 04:50

Cytomegalovirus

Lita T 04:52

Oh cytomegalovirus Thank you, Jean. And bacterial infections such as infections of the placenta or fetal membranes, And maternal pelvic infec, infections can cause it. jaundice or Jean?

Jean 05:09

Nope, I don't know this one.

Lita T 05:10

Okay, Ron,

Ron 05:12

What are you looking at me for?

Jean 05:15

Zain,

Lita T 05:16

(laughter) Zain? Karen neck care neck and neck terrorists? Okay,

Zain 05:21

I would see. I would say it's um Kernic Esrest, but I'm not sure

Jean 05:26

That sounds good.

Lita T 05:27

That sounds good.

Ron 05:28

That's what we're going with today

Lita T 05:29

We're going to go with that KernicTetris is the yellow color scene in the skin of many newborns. jaundice happens when a chemical called bilirubin builds in the baby's blood. When too much of this bilirubin builds up in the baby's blood the skin in the whites of the eyes might look yellow. This yellow coloring is called jaundice. And when severe jaundice goes untreated for too long, it can cause their condition that Zain pronounced properly and it can cause CP and other conditions. By the way, that condition is spelled k e r n i c. t e r us, Kernest..

Ron 06:07

I'm going to go with Kerner, Nick terus

Lita T 06:10

Kernicterus,

Jean 06:11

We're going to have a link on our...

Lita T 06:13

Website

Jean 06:13

Yes, yeah,

Lita T 06:14

That's the best way to go sometimes Kernicterus results from Abo and Rh blood type differences between the mother and the baby. This causes the red blood cells in the baby to break down too fast resulting in severe jaundice. medical conditions of the mother, such as mothers with thyroid problems, intellectual disability, or seizures have a slightly higher risk of having a child with CP, and other birth complications such as detachment of the placenta, a uterine rupture, or problems with the umbilical cord during birth, can disrupt oxygen supply to the baby, and result in CP.

Zain 06:55

Well, while that's all true, a small percentage of CP is caused by brain damage that occurs more than 28 days after birth. This is called the acquired CP and usually associated with infection, such as meningitis and head injury, or a problem with blood flow to the brain. cerebral vascular accidents for example, stroke or or bleeding in the brain associated with the blood clotting problem, blood vessels that didn't form properly, or heart defect that was present at birth or sickle cell disease,

Jean 07:28

Zain, what are some of the symptoms for cerebral palsy?

Zain 07:33

Sure, so because this condition begins to show signs and symptoms at a very early age, and individuals, parents or health care providers typically notice the signs and symptoms of cerebral palsy. The symptoms and effects of cerebral palsy vary depending on the location and extent of the injury to the brain, your child might normal intelligence or have learning difficulties or learning difficulties, your child might have mild difficulties with movement or be unable to control their limbs, despite the variations in symptoms of certain effects are common among people with cerebral palsy.

Ron 08:07

Wouldn't you say that it's kind of like a spectrum from mild to severe? Right?

Zain 08:12

Absolutely. 100 100%. Right. There's definitely there's definitely a spectrum.

Ron 08:18

Yeah, the CD says I'm sorry, the CDC says that in many cases, the cause or causes of congenital CP aren't fully known, which means that currently little can be done to prevent it. CP related to genetics is not preventable. But can acquired CP be prevented? And

Zain 08:41

It's a very good, it's a very good question. While there are actions people can take before and during pregnancy, as well as after birth, that might, excuse me, that might help reduce the risk of develop, of developmental problems, including CP, taking steps to help ensure a healthy pregnancy and to help prevent development. developmental problems, including CP acquired CP is often related to infection, or injury, and some of those cases can be prevented, but again, as as it stated, some of those cases just simply are impossible

Ron 09:21

Right

Zain 09:21

And cannot and cannot be prevented, so

Ron 09:24

Right, right.

Jean 09:26

Thank you. before pregnancy, it's a good idea to be as healthy as possible. I think that's what a lot of people strive for. And make sure that any infections that you might have are treated in any healthcare conditions that you might have like diabetes are under control. And ideally, they should be under control before you. You will conceive if if assistive reproductive technology or ART infertility treatments are being used to get pregnant, consider ways to reduce the chance of multiple pregnancies, twins, triplets, or more. I think some people think Up to like 1213 children at a time, such as transferring only one embryo at a time. And then having multiple pregnancies. It's also important to get vaccinated for certain diseases as Lita had mentioned, such as the chicken pox or rubella. And that could, those if you should contract those illnesses while pregnant, that could be harmful to the developing baby. It's also important to have many of these vaccinations before you become pregnant. And as we've learned Also, before you have an organ transplant, or any of those things as well, for undertaking any major life changes,

Lita T 10:38

Right. And during pregnancy, you should have early and regular prenatal care, both for your health and for the end of your developing baby. You should wash your hands often with soap and water to help reduce the risk of infections that might cause harm to your developing baby. Contact your health care provider if you get sick, have a fever or have other signs of infection during pregnancy. a flu shot is your best protection in our in our opinion, against serious illness from the flu, or flu shot can protect pregnant women and their unborn babies, both before and after birth. flu shots have not been shown to cause harm to pregnant women or their babies. If there is a difference in the blood type, or the Rh in compatibility between the mother and the baby, like we said it can cause jaundice and Kernicterus. I'm not going to get that one

Ron 11:32

(laughter)

Jean 11:32

Nope We'll hear about that later.

Lita T 11:34

Yep, women should know their blood type and talk to their doctor about ways to prevent problems. And also you should talk to your doctor about ways to prevent problems if you are at risk for preterm delivery, such as if you have multiple embryos. Research has shown that taking magnesium sulfate before anticipated early preterm birth reduces the risk of CP among surviving infants.

Zain 12:00

And in addition to that, it also leaves reducing risks after the baby's born, because any baby can get jaun jaundice severe jaundice that is not treated, can cause brain damage. Just like the mom before pregnancy makes sure your child has vaccines against infections that can cause meningitis. And with it, we'll see if I can get this one, um encephalitis Buckling their child in the car. Buckling their child in the car using an infant or child car seat, booster seat or seat belt according to the child's height, weight and age. Again, this is just our opinion of recommendations that should be done. Make living area safe. Make living areas safer for children by using window guards. Keep young children from falling from falling out of open windows and using safety gates at the top and bottom of stairs. Make sure make sure the surface of your child's playground is made of a shock absorbing material such as hardwood mulch or sand, carefully watching children at the time. At all times are in bathtubs swimming or wading pools, and natural bodies of water that should that should just go for any young child in general disability or not. Adults watching kids in the water should avoid distracting activities like using a computer or a mobile device reading or taking or talking on the phone. Talking on the phone might be the most dangerous one, in my opinion.

Jean 12:24

Yep right on Yeah,

Zain 12:52

Make sure your child wears a helmet. For activities like riding a bike. That's an obvious one. And of course, never hit, throw, shake or hurt a child. I know the sound like common sense things, but some young mothers may not know how dangerous life is for a very young child. That's right. Great advice Zain. As a matter of fact, I just heard on the news that they they are trying to reach out to very young mothers mothers that really don't have perhaps a mentor. They might be on their own. They don't have the the background and those type of mothers. They just might not have all of these tools at their disposal. So hopefully this episode will help them

Jean 14:14

Yeah, not everyone's been you know babysitting. Yeah,

Lita T 14:17

Yeah. Great. Zain. What treatments are available for somebody that's been diagnosed with CP ?

Zain 14:24

For sure, um, There are medications that can help with the muscle spasticity. In July of this year, the FDA has approved an expanded use of Dysport to treat upper and lower limbs spasticity which I actually did not know about, including that caused by CP for patients as young as two years and older. Overtime, CP might cause problems with muscles, bones and joints in your child might need surgery to address these issues or concerns.

Ron 14:54

Right Right, Zain. What tips do you have for someone whose child has recently been diagnosed with CP

Zain 15:01

um while there's still an ongoing education process to be have to be had just from my own personal experience, I would not recommend panicking. If you can find the right resources available to parents out there today. them from when I was born 21 years ago that I think that's key just because the world is evolved so much in that time. I see having a trustworthy doctor and focusing on the things that the child can do is a key to begin a positive outlook on life. For sure.

Ron 15:32

Right.

Lita T 15:33

That's great advice. And what would you What have you found to be the most common misconception about CP?

Zain 15:42

I've noticed that a lot of people think that the people were born with CP are born exactly the same way. So I would say every person is born with it. So I would say the biggest misconception that people have is every person born with it as the same journey of life. While in actuality, people want to live with the condition and focus on the things they can control.

Ron 16:05

I like this kid.

Lita T 16:07

He's got a good he's got a good future ahead of him

Ron 16:10

Got a good outlook. Yeah, I mean, that's exactly we focus on what we can do not what is difficult or what we can't do.

Lita T 16:16

Right.

Ron 16:16

So I love the way you view that. Your outlook, Zain, um, how about your friends and family? What kind of role have they played in your life? And do you have any other support systems that you found to be helpful?

Zain 16:30

Yes, um thankfully, I have a good support system, both from friends and family. They've been extremely supportive in all my endeavors. Anything for me, scuba diving over a decade ago to participating in athletics as a social media manager in high school, or for the football and basketball teams, they've always been there. I also think that surrounding yourself with positive people will only make life more fun. And I've also recognized that focusing on your inner self motivation, working out meditation, any of those things, is also a good way to reset and focus on your whole self too. Because at the end of the day, what's inside you, in my opinion is most important. So

Jean 17:13

That's, that's fantastic. And I have a question. You're a Downers Grove North grad. Is that correct?

Zain 17:19

I sure I sure am absolutely.

Jean 17:22

We have three my my Lita's three grandsons all went to Downers Grove north too so you guys are all in good company. all, Alumns. Yes, all Alumns, I have a question. So what first interested you in journalism? And then what drew you specifically to sports journalism? Because I hear we actually read some of your some of your articles for Downers Grove North? And I'm just curious what first inspired that? Do you have like a favorite journalist?

Zain 17:49

Sure. So um, I mean, when I was in high school, I knew I wanted to do something. um in sports. Because um in middle school, I had been a public address announcer for the middle school basketball teams. And I knew I wanted to do something similar in high school, because of course, I can't physically play organized athletics. And when I was a junior in high school, I took a intro to journalism class. And thankfully, the teacher who's actually the current head softball coach, there was really big into sports and kind of drew me into the entire industry,

Jean 18:26

Okay,

Zain 18:27

And I took in all and I took in all the knowledge, and I just knew that's the path I wanted to pursue myself on. And, you know, thankfully, I was able to be given all these wonderful opportunities, and I owe a lot to him and, and of course, I owe a lot to, to my head coaches, that I was able to help out as a manager for varsity football, varsity basketball my final two years there, and you know that North's a place that's always going to be it's always going to be with me for a very long time. And I'm always going to consider Downers Grove home. So it's been a it's been a wonderful experience and a very, very good question.

Lita T 19:05

That's great. Yeah, I have another follow up. I'm sorry.

Ron 19:09

And I have a follow up your follow up.

Jean 19:10

(laughter)

Lita T 19:10

Ok alright

Ron 19:11

(laughter)

Jean 19:11

And then I have a follow up

Lita T 19:12

Alright Zain, You got us going here. Do you have a podcast yet?

Zain 19:17

Um, I did a very long time ago. At the moment. I have one right now. It's called Sports. Talk From A to Z. It's a podcast with me and my college roommate. Um, you can find it on YouTube by searching Sports Talk From A to Z, we talk about everything from sports, to social justice issues to things that we don't like with commissioners. It's pretty it's pretty interesting.

Ron 19:42

(Laughter) Sorry to laugh.

Zain 19:45

Yeah, we have. There's a lot there's a lot packed into it. We have about like 17 episodes or so.

Lita T 19:51

That's great.

Zain 19:52

We took a break for we took a break from it for a little bit. We're hoping it start it up again in the next couple weeks. Because of we really like doing it. And then I'm also a freelance writer for Insider.com I cover Illini-athletics and mixed martial arts. So if anything from the UFC Bellator and numerous other MMA organizations, I write about them as well. So I'm around, kind of in a couple of different media spaces, and I'm pretty easy to reach to. And we'll get to that near the end of the episode.

Lita T 20:24

Right, right, right, I just, you're just the way you're carrying the way you're carrying us through this episode. I wish you were running our pockets. (laughter)

Ron 20:33

I told you I like this kid.

Lita T 20:34

Ohhhh

Ron 20:35

So, you know what, I'm gonna probably show some of my ignorance over here. You're from Downers Grove. And we are basically in the Chicago region. I'm not a huge follower of follower of the White Sox. But I do know that the Chicago White Sox baseball team has an announcer that has CP I don't recall the gentleman's name, but have you ever reached out to him for any advice?

Zain 21:01

It's a very good question, as his name is Jason Benetti. He's a wonderful announcer. Unfortunately, I've tried reaching out to him multiple times. But um, you guys may not know this. He's a very, very busy person. Not only does he do White Sox baseball, he does college football and during his, big time college basketball games, through the winter months. I've tried a couple of times, things just haven't worked out. But I'm very hopeful that we can cross paths. And some day because he does have the same disability. I do. And he does tremendous work. And he's just somebody that I think a lot of people in the sports industry should continue to work up to, because he's going to be either the next generation of people that are going to be coming through the pipeline. So thank you again, for for mentioning that. Yes. I'm very well aware of who Jason Benetti is.

Ron 21:53

Okay. Cool. Cool. Cool. Cool.

Jean 21:54

And then I have another question. He had several questions. I try to limit it. Sorry.

Ron 21:58

(laughter) Um, he's like, are these people done yet?

Jean 22:01

Um, so Zain, what is it been like, at the university with COVID? And everything? And how is learning changed?

Zain 22:09

Um, I mean, it's been interesting. I actually decided to stay home for the semester because of COVID. But I think overall, the university has done a tremendous job with the revolutionary saliva test, they've been able to make it through the entire semester. And I'm looking forward to going back in the spring and just seeing what a COVID semester is going to be like, because I think we're going to be with this virus for a little bit. And, yeah, I think, I think it's just one of those things that where we kind of all have to get through it and stay positive and again, like, kind of the theme of this episode has been, we need to control what we can control at this point. And yeah, absolutely.

Ron 22:48

Okay. Speaking of control, I'm going to take control the mics right now I'm gonna cut off Jean and Lita, we're gonna wrap this up. And we do appreciate your time. But one thing I did want to talk about, I think somebody earlier mentioned something about water, or Dive or Dive Heart. But I know, you've been with an organization called Dive Heart that does scuba diving for children, adults and veterans with disabilities. But is it more than just jumping in the water or breathing underwater, does it? How much more does that affect you doing that sport?

Zain 23:31

Well, I mean, that's a great, that's a great question. First off, they've always been in tremendous organization. They, they, they gave me You know, they give people opportunities where they don't feel like they have kind of an avenue to go through. And that's one of the things that I felt when I was younger when I did it. So the freedom of movement underwater is one of the most satisfying things you could ever have. I think scuba is less about the act of getting underwater, and feeling relaxed, and more about all the prep stuff, the teamwork, the communication associated with being able to work with a group of experienced divers being able to learn all the different equipment and kind of what the kind of what the rules and regulations are and just being with people who are going to be there that are going to be able to support you as you kind of feel the freedom underneath underneath the water. And for some it's an exhilarating feeling because when they're out of the water they don't they either they either don't feel that movement or sensation or it's very difficult for them. So that's something that's something that I've noticed, just simply doing the sport and being a part of it for for as long as I was.

Ron 24:50

That's great. That's absolutely great. Thank you. Thanks so much for that.

Jean 24:54

And Zain. How can our listeners learn more about you, um, you were talking about how you have a you know, there's a Spots Talk From A to Z on YouTube. Do you have any other social media accounts?

Zain 25:06

Oh yeah, you can find me everywhere on all the major social media platforms from our Instagram, Twitter and Snapchat, or my handle was @ZainBando99 that's Z A I N B A N D O nine, nine. You can follow me on all of those. My DMS are always open. If anyone would like to talk, I'm always active via all those all the time. I'm actually a huge social media junkie so you can find me uhh you can find me anywhere.

Jean 25:36

So I want to put them in charge of the podcast. (laughter) Yeah. And, and our social media. Yes.

Ron 25:41

And my archery website.

Lita T 25:42

Right, right. Right, we're gonna get you going,

Jean 25:44

You're gonna be busier than, than Jason,

Lita T 25:47

Thank you. Thank you so much for joining us today's Zain we really appreciate it.

Zain 25:52

Oh, you're welcome. Thank you guys for having me on. Again. I was really happy that we were able to do this. And you go, I think you guys will continue. And you are continuing to do a good job of giving another platform for people to listen to before they can go out and make their own make their own decisions on what's best for them medically. So kudos to you guys for that and thank you again, you guys did a tremendous job and kept me entertained the whole time so thank you

Lita T 26:20

(laughter)

Ron 26:20

We're nothing if not entertaining.

Lita T 26:21

Oh yeah. We don't charge extra. If you have any questions or comments related to today's show, you could drop us a line at podcast dx@yahoo.com through our website, podcast dx.com and Facebook, Twitter, Pinterest or Instagram.

Ron 26:38

And if you have a moment to spare, please give us a five star review wherever you get your podcast. As always, please keep in mind that this podcast is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition or treatment, and before undertaking a new health care regime, and never disregard professional medical advice, or delaine. Taking it because of something you've heard on this podcast

Jean 27:09

Till next week.

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A very positive attitude for sure!!

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Epilepsy care at Mayo Clinic

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Our guest today is Lita again, she has recently had her torn rotator cuff repaired.

I would like to refer to the Mayo Clinic to explain this complex group of muscles and ligaments:

The rotator cuff is a group of muscles and tendons that surround the shoulder joint, keeping the head of your upper arm bone firmly within the shallow socket of the shoulder. A rotator cuff injury can cause a dull ache in the shoulder, which often worsens with use of the arm away from the body.

Rotator cuff injuries are common and increase with age. These may occur earlier in people who have jobs that require repeatedly performing overhead motions. Examples include painters and carpenters.

Many people with rotator cuff disease can manage their symptoms and return to activities with physical therapy exercises that improve flexibility and strength of the muscles surrounding the shoulder joint.

Sometimes, rotator cuff tears may occur as a result of a single injury. In those circumstances, medical evaluation should be provided as soon as possible to discuss the role of surgery. Extensive rotator cuff tears may not be fixable, and transfer of alternative tendons or joint replacement may be possible. (for more info)

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Two Co-Hosts discuss injectable neurotoxins as a medical treatment, especially for migraines.

Neurotoxins are injected around pain fibers that are involved in headaches. It enters the nerve endings around where it is injected and blocks the release of chemicals involved in pain transmission. This prevents activation of pain networks in the brain.

It prevents migraine headaches before they start

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Volunteering can help you make friends, learn new skills, advance your career, and even feel happier and healthier. With busy lives, it can be hard to find time to volunteer. However, the benefits of volunteering can be enormous. Volunteering offers vital help to people in need, worthwhile causes, and the community, but the benefits can be even greater for you, the volunteer. The right match can help you to find friends, connect with the community, learn new skills, and even advance your career.

Giving to others can also help protect your mental and physical health. It can reduce stress, combat depression, keep you mentally stimulated, and provide a sense of purpose. While it’s true that the more you volunteer, the more benefits you’ll experience, volunteering doesn’t have to involve a long-term commitment or take a huge amount of time out of your busy day. Giving in even simple ways can help those in need and improve your health and happiness.

Benefits of volunteering: 4 ways to feel healthier and happier 1. Volunteering connects you to others 2. Volunteering is good for your mind and body 3. Volunteering can advance your career 4. Volunteering brings fun and fulfillment to your life

Our guest this week is Scott Alm. Scott was born and raised in the Chicago area. He is a real estate appraiser by trade, but his real passion is adaptive sports. Adaptive sports favorites include Diveheart Advanced Adaptive Dive Buddy specializing in quadriplegics with full face masks, Adaptive Adventures Lead Ski Instructor specializing in tethering sit skiers with fixed out riggers, and Blind Ski Guide with American Blind Skiing foundation.

Other sports include adaptive snowboard instructor, adaptive water skiing fitter/catcher/jumper, adaptive bike fitter and mechanic, tandem bike pilot, adaptive kayak fitter and guide, and adaptive rock climbing helper monkey.

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Hyperacusis is defined as a collapsed tolerance to normal environmental sounds. Ears also lose most of their dynamic range. Dynamic range is the ability of the ear to deal with quick shifts in sound loudness. Suddenly everyday noises sound unbearably or painfully loud. The disorder is often chronic and usually accompanied by tinnitus (ringing in the ears), but can occur in patients who have little or no measurable hearing loss.

Hi, My name is Jemma, I’m 16 years old and have a rare disorder called hyperacusis, which causes me to experience pain from normal noise. There is very little research done on hyperacusis, and no laws or policies to provide accommodations to those living with hyperacusis. My goal is to help raise awareness about hyperacusis and other rare disorders/chronic pain conditions, put in place laws to accommodate those with hyperacusis, and push for more research to be done on hyperacusis. I have started a website, Instagram, Facebook, and YouTube called a Hyperacusis Awareness.

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Even though we often feel Physicians are 'super-heroes" during times of extreme stress even these heroes need support! Dr. Jackson is here today to talk with us about the care and support that physicians can give one another. The current pandemic is such a stressful time for all of us, have you considered how hard it is on the front line workers?

Dr. Kimberly Funches Jackson is a board-certified physician and founder of Physicians Working Together. Dr. J is also the founder of National Physicians Week, a national celebration, (March 25-31) that recognizes the dedication, sacrifice, and triumph of physicians across-the-board.

Dr. Jackson graduated from William Carey University before receiving her Doctor of Medicine from The University of Mississippi School of Medicine. She's the co-owner and Medical Director of Jackson Point of Light Family Medicine & Pediatrics located in Phenix City, Alabama. With more than 11 years of experience in medicine, Dr. Kimberly Jackson has a proven track record of going above and beyond to provide quality healthcare.

In addition to her medical practice, Dr. Kimberly Jackson has been a strong advocate for improving the healthcare system. She’s also a member of Delta Sigma Theta Sorority, Inc. Dr. J serves on the board of community-based organizations and she is a dedicated member of several physician groups.

Dr. Jackson founded Physicians Working Together (PWT) in 2015 to create an exciting social movement that focuses on connecting, collaborating and caring for physicians, medical students, and the communities served. The non-profit organization is an important cornerstone of physician advocacy, positive public relations, and educational empowerment. PWT provides a platform where doctors can combine efforts that will strengthen healthy physician relationships through collaboration and genuine camaraderie. "By fostering supportive relationships, we will strengthen our ability to provide quality patient care overall."

Within the first two years of organizing PWT, Dr. Jackson arranged healthcare town halls to call for positive change in healthcare. The altruistic leader opened the dialogue between legislators about the importance of physicians' leadership in practice, professional development, and the overall well-being of both physicians and the community. PWT also features a Medical Student Mentorship Program that educates and inspires future healthcare professionals with the knowledge, skills, and abilities that they will need to overcome today’s challenges and embrace tomorrow’s trends.

Dr. Kimberly Jackson was recognized by Medelita's H.I.P. (Honoring Inspiring Professionals) Ambassador Program. The program honors medical professionals at every level who stand out in their specialty and/or community.

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Rabies is a fatal but preventable viral disease. It can spread to people and pets if they are bitten or scratched by a rabid animal. In the United States, rabies is mostly found in wild animals like bats, raccoons, skunks, and foxes. However, in many other countries dogs still carry rabies, and most rabies deaths in people around the world are caused by dog bites.

Animals most likely to transmit rabies in the United States include bats, coyotes, foxes, raccoons and skunks. In developing countries of Africa and Southeast Asia, stray dogs are the most likely to spread rabies to people.

Once a person begins showing signs and symptoms of rabies, the disease nearly always causes death. For this reason, anyone who may have a risk of contracting rabies should receive rabies vaccinations for protection.

The first symptoms of rabies may be very similar to those of the flu and may last for days.

Later signs and symptoms may include:

Fever
Headache
Nausea
Vomiting
Agitation
Anxiety
Confusion
Hyperactivity
Difficulty swallowing
Excessive salivation
Fear brought on by attempts to drink fluids because of difficulty swallowing water
Hallucinations
Insomnia
Partial paralysis

When to see a doctor Seek immediate medical care if you're bitten by any animal, or exposed to an animal suspected of having rabies. Based on your injuries and the situation in which the exposure occurred, you and your doctor can decide whether you should receive treatment to prevent rabies.

Even if you aren't sure whether you've been bitten, seek medical attention. For instance, a bat that flies into your room while you're sleeping may bite you without waking you. If you awake to find a bat in your room, assume you've been bitten. Also, if you find a bat near a person who can't report a bite, such as a small child or a person with a disability, assume that person has been bitten.

Rabies infection is caused by the rabies virus. The virus is spread through the saliva of infected animals. Infected animals can spread the virus by biting another animal or a person.

In rare cases, rabies can be spread when infected saliva gets into an open wound or the mucous membranes, such as the mouth or eyes. This could occur if an infected animal were to lick an open cut on your skin.

Animals that can transmit the rabies virus Any mammal (an animal that suckles its young) can transmit the rabies virus. The animals most likely to transmit the rabies virus to people include:

Pets and farm animals * Cats * Cows * Dogs * Ferrets * Goats * Horses

Wild animals * Bats * Beavers * Coyotes * Foxes * Monkeys * Raccoons * Skunks * Woodchucks

In rare cases, the virus has been transmitted to tissue and organ transplant recipients from an infected organ.

Risk factors Factors that can increase your risk of rabies include:

Traveling or living in developing countries where rabies is more common, including countries in Africa and Southeast Asia
Activities that are likely to put you in contact with wild animals that may have rabies, such as exploring caves where bats live or camping without taking precautions to keep wild animals away from your campsite
Working in a laboratory with the rabies virus
Wounds to the head or neck, which may help the rabies virus travel to your brain more quickly

Prevention To reduce your risk of coming in contact with rabid animals:

Vaccinate your pets. Cats, dogs and ferrets can be vaccinated against rabies. Ask your veterinarian how often your pets should be vaccinated.
Keep your pets confined. Keep your pets inside and supervise them when outside. This will help keep your pets from coming in contact with wild animals.
Protect small pets from predators. Keep rabbits and other small pets, such as guinea pigs, inside or in protected cages so that they are safe from wild animals. These small pets can't be vaccinated against rabies.
Report stray animals to local authorities. Call your local animal control officials or other local law enforcement to report stray dogs and cats.
Don't approach wild animals. Wild animals with rabies may seem unafraid of people. It's not normal for a wild animal to be friendly with people, so stay away from any animal that seems unafraid.
Keep bats out of your home. Seal any cracks and gaps where bats can enter your home. If you know you have bats in your home, work with a local expert to find ways to keep bats out.
Consider the rabies vaccine if you're traveling. If you're traveling to a country where rabies is common and you'll be there for an extended period of time, ask your doctor whether you should receive the rabies vaccine.

This includes traveling to remote areas where medical care is difficult to find.

(Data from Mayo Clinic)

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Moira Cleary (more-a), a mom of two beautiful, smart, funny teenagers who both live with often debilitating chronic conditions, is a Certified and Accredited Professional Coach as well as a Mindfulness Practitioner, she is sharing her knowledge and experience with Moms struggling, as they parent children with challenging, complex or even extra-ordinary needs. She is on a mission to help mothers find their strength so that they can show up for themselves and their families the way they want to, not just with the left overs. Her focus is simple, you matter as much as your family. She and her daughter deal with Celiac Disease on a daily basis and is here to share her story.

Celiac disease is a digestive disorder that causes problems in your small intestine. You experience the problems when you eat foods that have gluten. Gluten is a protein found in the grains wheat, rye, and barley.

In people who have celiac disease, gluten causes the immune system to attack the small intestine. This damages the small intestine. When this happens, your body doesn’t absorb or get the important nutrients it needs. These include vitamins, calcium, protein, carbohydrates, and fats. Your body can’t work well without these nutrients.

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This week we are discussing endometriosis. Endometriosis is an often painful disorder in which tissue similar to the tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. Endometriosis most commonly involves your ovaries, fallopian tubes and the tissue lining your pelvis. Rarely, endometrial tissue may spread beyond pelvic organs.

Returning to our show to discuss endo is our guest Asiya Rafiq. She joined us last week to talk about adaptive clothing.

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Our guest this week is Asiya Rafiq. She has an educational background in Psychology, and is a Certified Applied Behavioral Analyst from Dubai. She is also a Certified Volunteer in Special Olympics with the United Arab Emirates. From a business standpoint she is an advertising professional, a Modest Fashion Designer (Specialist Adaptive Wear), and a Fashion Virtual Reality Filmmaker. She just completed her film on parental separation which addressed an important issue of how 'parental separation' can affect a child's mental health. Her films cover real stories with social causes, giving voice to the voiceless.

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Have you ever felt overwhelmed at trying to balance family and life? Dr. Tameka Blake is here with us to discuss the importance of achieving a balance and gives us an idea of how a physician might attain balance between running a business and being a doctor.

Dr. Blake is originally from Brooklyn, NY. In 2001, she attended Cornell University graduating cum laude with a Bachelor of Arts degree in Chemistry. She later graduated from Weill Cornell Medical College in New York in 2006. She is a medical director and board-certified emergency physician practicing in metro Atlanta for 10 years. Currently, she serves as the Chairwoman of Emergency Medicine at Piedmont Newton Hospital in Covington, GA. She owns two Jamaican franchise locations, Golden Krust Caribbean Restaurant located southeast of Atlanta. She is married with three children, ages 8, 9 and 17. She enjoys traveling and spending quality time with her family.

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Chronicling, or journaling is an important part of the health care field! For patients or the professional medical team looking after patients, a great deal can be gained by simply writing down your experiences, symptoms, thoughts or ideas! We don't often get a viewpoint form the medical team members and were very happy to include "The Women in White Coats"

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This week we are talking with Doctor Kat Ogle on discrimination in healthcare. From medical students to doctors and naturally the patients in between, how common is racism in the medical community and what can be done to end it? Dr. Ogle doesn't hold back on this important topic!

Dr. Kat Ogle| Washington DC Emergency Medicine Physician

Author

Dr. Ogle is a board-certified Emergency Medicine physician, currently practicing at The George Washington University Hospital, Washington VA Medical Center and United Medical Center in Washington, DC. She is a first-generation college graduate and physician and began her career with seven years as a registered nurse, nearly six of which were spent in critical care. She attended the George Washington University School of Medicine & Health Sciences for medical school, Emergency Medicine residency and finally an Emergency Ultrasound fellowship. In 2014, she furthered her passion for medical education by completing Master Teacher Leadership Development Program at GW. She has been on the faculty since 2013.

As an Assistant Professor of Emergency Medicine at the George Washington University School of Medicine & Health Sciences and is actively engaged in medical student, resident and fellow education. She is the Emergency Ultrasound Fellowship Director, Executive Chair of the Clinical Competency Committee for the residency. She directs the Medical Education and Leadership Scholarly Concentration at the medical school level and leads Teaching and Learning Knowledge and Skills, a senior elective during which students learn concepts and tools which will facilitate their growth as clinician educators. She has fostered engagement with the women faculty within her department and co-founded their professional development group, GW Emergency Medicine Females or GWEMFEM. Through this group, she encourages and inspires amplification and promotion of her women physician peers.

On a national level, she has served in several leadership roles: as the Didactics committee chair for the Academy for Women in Academic Emergency Medicine for the last three years and has been elected as the Vice President of Education for AWAEM in the summer. She is also an elected counselor, serving on the Society of Clinical Ultrasound Fellowships Board. Within AWAEM, she served co-chair of the Task Force on Starting a Women’s Group within AWAEM, a group embarking upon the development of the AWAEM Toolkit 2020 Edition, released early this year. She has been engaged in education and speaking at both national and international levels and she incredibly proud being selected as one of the speakers for FIX19 in which she shared a very personal story about the intersection of alcoholism, intimate partner violence and child abuse. Dr. Ogle's professional interests include point of care ultrasound, both undergraduate and graduate medical education, mentorship, female leadership and promotion as well as wellness. She balances her academic and professional responsibilities with her role as a single mother and co-parent.

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An upper endoscopy is a procedure used to visually examine your upper digestive system with a tiny camera on the end of a long, flexible tube. A specialist in diseases of the digestive system (gastroenterologist) uses an endoscopy to diagnose and, sometimes, treat conditions that affect the esophagus, stomach and beginning of the small intestine (duodenum). Finding esophageal ulcers wasn't what our guest and co-host Lita expected to find!

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FINDING THE RIGHT Mental Health Professional isn't difficult—and it shouldn't be. There still exists a stigma of sorts, that taking care of your mental health is taboo and people may be reluctant to even ask about care. When you put your life in someone else's hands, you need to feel confident that this is an individual with enough smarts, qualifications, and skills to give you the care you deserve.

Michael has been helping change individual lives for over 20 years as a counselor, a coach and a mentor. His passion is in helping veterans, first responders and their families. He enjoys spending time with his wife and daughter, playing basketball, and playing video games.

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I am Lwimba Kasongo and I have been living with sickle cell for over 30 years! I call myself a warrior because i have come this far despite the challenges that come with living with Sickle cell . The pain, the stigma, the in an out of hospital , the medicines all make it a hard journey. Living with Sickle cell is a daily battle field but to come this far is victory for me, because no matter how much I fall, still I rise up. I am a fighter, a warrior and with the right medication and do's and don'ts of managing of Sickle cell and family support the possibilities are endless for me, because Sickle cell has nothing on me.

I am a university graduate and a visual artist. I currently volunteer at two Hospitals in my city Lusaka, Zambia. It is a way of helping my fellow sickle cell patients, because i understand their struggles. Through my journey I encourage others who are walking the same journey!

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Oluyemi ‘Yemi’ Moses was born in Durham, NC, USA to parents who immigrated from Nigeria. She was the middle child in a family with seven children; four of those children were born with sickle cell disease, and Yemi was one of them. Throughout her life she has stood firm on the belief that sickle cell would not diminish her life, and her life experiences attest to that.

She graduated from North Carolina Central University in 1998 with a B.S. degree in Human Sciences and moved to Brooklyn, NY, where she furthered her education and became a certified Special Education teacher. While in NY, Yemi taught Special Education to middle school students; she was an assistant basketball coach and helped to create and coach a cheer-leading squad. She also organized and led an HBCU (Historically Black Colleges and Universities) College Tour for the students at her school, among many other things. Her focus was always on the total child, so although she worked with her students to ensure that they excelled academically, she understood the importance of extracurricular activities and other opportunities for learning. In 2006, Yemi moved to Nigeria where she worked for an NGO (Non Government Organization) and taught at an international school. While in Nigeria, she had the opportunity to experience and understand her culture and this made a tremendous impact on how she views life.

Upon returning to the US, she pursued her interest in clinical research and began assisting with the monitoring of clinical trials. Currently, she is a Senior Clinical Research Associate and has had the privilege to participate in trial studies where study drugs in these studies have been beneficial to the patient population, and subsequently approved by the US Food and Drug Administration. She consistently dedicates herself to her team to ensure that timelines and targets are met and has played a leadership role mentoring junior staff over the last several years. She prides herself in her ability to organize and is very detail oriented.

Of all the challenges Yemi has undertaken, and all the roles she has played, her most pivotal role has been the role of a mother, which she became in her early forties. Yemi enjoys spending time with her daughter and looks forward to the journey of motherhood.

Yemi continually explores her love of traveling and meeting people from different cultures. She has been blessed with the desire and opportunity to travel around the globe, and has many more places that she would love to see as she looks forward to a long and healthy life.

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Our guest today is Sophia Anna, also known as "The Sick Sexy" and continues in our series on Sickle Cell. Born in 1993 and originally from England with a background of Greek and South American heritage, Sophia Anna is an online writer, content creator, model and works in healthcare. She is extremely passionate about invisible illness and launched her youtube channel: The Sick Sexy as an honest, raw platform about de-stigmatizing invisible illness and how to embrace it.

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Sickle cell disease (SCD) is a chronic vascular disease, with a range of acute and chronic complications driven by ongoing vaso-occlusion. The diverse clinical manifestations of SCD can affect organs throughout the body. The self-perpetuating cycle of vaso-occlusion and vaso-occlusive crises (VOCs) may account for the majority of the burden of SCD.

MORE ABOUT OUR GUEST

My name is Agnes, co-founder and Executive Director for ASCA.

Our baby girl Joy had sickle cell disease (SS). She was born at King Edward Memorial Hospital in Perth late 2000s. At the time, my husband and I were unaware that we carried the sickle cell trait until she was diagnosed at 14 months old. We have three other children who do not have this condition. The warning signs were present during my pregnancy with Joy when I became very sick requiring admission to the intensive care unit for over two weeks. I was in the hospital for almost two months without a conclusive diagnosis and was only treated with steroids, different vitamins, and trial & error antibiotics to treat what seemed like sickle cell crisis symptoms. Even though the hospital detected that I had the sickle cell trait, they didn’t go further to test my husband to rule out the possibility of our daughter having the sickle cell disease. I should mention however, that, King Edwards hospital has now put guidelines to manage mothers and at-risk babies by doing sickle cell pre-natal testing.

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Bile ducts carry the digestive liquid bile from your liver to your small intestine. In primary sclerosing cholangitis, inflammation causes scars within the bile ducts. These scars make the ducts hard and narrow and gradually cause serious liver damage. Our guest today is Jenna Zigler an avid blogger at The Comical Colon

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Narcolepsy is a chronic sleep disorder characterized by overwhelming daytime drowsiness and sudden attacks of sleep. People with narcolepsy often find it difficult to stay awake for long periods of time, regardless of the circumstances. Narcolepsy can cause serious disruptions in your daily routine. Our guest today is Lindsey who will discuss her life with narcolepsy. Lindsey grew up in Charlotte NC and is currently residing nearby in Belmont, NC with her husband and dog. She was diagnosed in May of 2019 after dealing with symptoms since childhood. She was previously misdiagnosed and had doctors dismiss her sleepiness for being a normal teenager or college student. She continued to press doctors for answers and finally received a diagnosis and began treatment less than a year ago. She is now trying to speak out an advocate so that others do not have to have the same long path to diagnosis she did.

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Whatever type of surgery you’re having and wherever you have it, there are some things you can do to prepare for surgery and ease your recovery. Our guest, Kristal Kent, discusses what has helped her prepare for surgery while living with a chronic illness!

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Diane is a stage IV lung cancer survivor. She lives in Momence, Illinois with her husband, two dogs, and one cat. She works full time as a supply chain clerk. In her free time, she loves to travel and spend time with her family including her twin sister, new niece and two nephews.

Non-small cell lung carcinoma is a type of lung cancer, also commonly referred to as non-small cell lung cancer (NSCLC). This is a dangerous disease that can cause breathing difficulties and ultimately affect your quality of life. If diagnosed late or left untreated, it can be life-threatening.

NSCLC occurs when healthy cells become abnormal and grow rapidly. One danger of this form of cancer is that there’s a high likelihood that the cancer cells will spread from the lungs to other organs and body parts.

There’s no single cause of NSCLC, although smoking puts you at a significantly higher risk. However, even nonsmokers can get this type of lung cancer. Other risk factors include exposure to air pollution and chemicals, as well as a family history of the disease. (Healthline.com)

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Spiro Koulouris is a leading gout diet expert, author, and blogger at goutandyou.com. He’s dedicated his life to inspiring people to obtain a healthy lifestyle and living a gout-free life. Called the “rich man’s disease”, gout is considered one of the most painful of the rheumatic conditions and is a rapidly growing problem that afflicts an alarming number of people.

It’s greatly affected by diet and those with the disease are often prescribed drugs that need to be taken for the rest of a person’s life - the side-effects creating additional problems. Spiro has battled with the disease for years and has dedicated himself to become educated and informed on the subject. He has become an expert in the different home remedies, medicines, health practices and experiments from around the world. As the founder of GoutandYou.com Spiro is intent on educating the gout sufferer in hopes of beating this terrible disease for good.

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Coronaviruses are a family of viruses that can cause illnesses such as the common cold, severe acute respiratory syndrome (SARS) and Middle East respiratory syndrome (MERS). In 2019, a new coronavirus was identified as the cause of a disease outbreak that originated in China.

The virus is now known as the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). The disease it causes is called coronavirus disease 2019 (COVID-19). In March 2020, the World Health Organization (WHO) declared the COVID-19 outbreak a pandemic.

Public health groups, including the U.S. Centers for Disease Control and Prevention (CDC) and WHO, are monitoring the pandemic and posting updates on their websites. These groups have also issued recommendations for preventing and treating the illness.

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Our guest this week is Jennifer Kraft. Jenny suffered a spinal cord injury in a bicycling accident which left her paralyzed. Spinal cord injury (SCI) results in loss of nervous tissue and consequently loss of motor and sensory function. There is no treatment available that restores the injury-induced loss of function to a degree that an independent life can be guaranteed. Transplantation of stem cells or progenitors may support spinal cord repair. (https://bit.ly/2VBV9rC)

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Our guest for this week is Casey Hersch, MSW, LCSW, is a licensed clinical social worker, author, and founder of www.lightyoursparkle.life. She specializes in integrative treatment models for chronic illness. Inspired by her own struggles with autoimmune illnesses and trauma, she educates about empowerment and how to build individualized healing plans. She talks about her life with Crohns Disease and her discovery into the mind/gut connection.

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FINDING THE RIGHT doctor isn't easy—and it shouldn't be. When you put your life in someone else's hands, you need to feel confident that this is an individual with enough smarts, qualifications, and skills to give you the care you deserve.

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A hernia occurs when an internal organ or other body part protrudes through the wall of muscle or tissue that normally contains it. This episode discusses all hernia types with more attention given to inguinal hernias with descriptive text that may not be appropriate for all listeners.

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Our guest today is Brian Tally. Brian developed idiopathic osteomyelitis in his spine in 2012. The infection was missed by the healthcare providers and he ended up with severe damage to not only his spine but his organs as well as the disease ate away at him from the inside.

Brian is a former Sgt in the United States Marine Corps. He was stationed in Camp Lejeune NC where he served with BTO Co 2d FSSG, Okinanwa Japan where he served with Landing Support Co 3d FSSG and Camp Pendleton having served with base Hazmat / Compliance. He enlisted in 1994 and served active from 1995-1999. Brian has been married for 20 years, has 4 children, and is a dedicated family man . He spends his time advocating and lobbying Congress to ensure the rights and protections of all veterans.

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Although there is no single cause to suicide, suicide is a major public health concern. Over 47,000 people died by suicide in the United States in 2017; it is the 10th leading cause of death overall. Suicide is complicated and tragic, but it is often preventable. Knowing the warning signs for suicide and how to get help can help save lives. It most often occurs when stressors exceed current coping abilities of someone suffering from a mental health condition. Our guest today is a suicide survivor and speaks openly about this difficult topic.

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Focal Segmental Glomerulosclerosis (FSGS) is a disease in which scar tissue develops on the parts of the kidneys that filter waste from the blood. Our guest today, Jon Rankin is a runner that discovered he had this disease as he was taking a physical for the Olympics. Jon was the 17th African American male to break the 4 minute mile!

Focal = some Segmental = sections Glomerulo = of kidney filters Sclerosis = are scarred

In the spring of 2008, Jon Rankin was ranked among the best milers in the world. He had run a personal best of 3:53 for the mile and was ranked 4th in the US by Track and Field News that year. He was a favorite to finish in the top 3 at the US Olympic Trials and qualify for the 2008 Olympics later that summer. As part of a routine physical prior to the Trials, he was diagnosed with a terminal, incurable chronic kidney disease called focal segmental glomerulosclerosis (FSGS). Despite the diagnosis and his reduced kidney function, he finished 6th at the Trials, earning an alternate spot on the team.

Three years later, Jon received an experimental stem cell treatment that appears to have reversed his chronic kidney disease. He is the only known person in the world to have received this treatment for FSGS. He is now completely healthy and is once again pursuing his Olympic dream, this time in the marathon. Jon is also committed to sharing his kidney disease story and advocating for research into stem cell treatments for chronic kidney disease sufferers via his public speaking and his inspirational apparel company Go Be More. #https://gobemore.co/founder

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Finding the right doctor can make all the difference! Wellacopia provides a "healthcare relationship connection."

According to the Wellacopia Website: "The patient-practitioner relationship encompasses 4 key elements: mutual knowledge, trust, loyalty, and regard.

Knowledge refers to the practitioner's knowledge of the patient as well as the patient's knowledge of the practitioner.

Trust involves the patient's faith in the practitioner's competence and caring, as well as the practitioner's trust in the patient and his or her beliefs and report of symptoms.

Loyalty refers to the patient's willingness to forgive a practitioner for any inconvenience or mistake and the practitioner's commitment not to abandon a patient.

Regard implies that the patients feel as though the practitioner likes them as individuals and is “on their side.”

These 4 elements constitute the foundation of the patient-practitioner relationship. The patient-practitioner relationship is a powerful part of a practitioner's treatment and can alter health outcomes for patients."

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We certainly realize suicide is a serious matter, but we have a guest that has chronic suicide ideology and yet, he is a stand up comedian!

He literally puts a new spin on mental health. He was lucky enough to get off the ship he was working on (in his stand-up role) after being turned away by several countries due to the Corona Virus. During the brief break he called in from Cambodia! Yes, this is an episode you won't want to miss!

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Sharon Krischer was diagnosed with Parkinson’s Disease in October, 2009 after several years of experiencing odd symptoms. Ever since she has read everything she could find on Parkinson’s with the goal of finding a way to move on – literally – and not be defeated by the disease.

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Most kinds of Juvenile Arthritis are autoimmune or autoinflammatory diseases. That means the immune system, which is supposed to fight against foreign invaders like viruses and germs, gets confused and releases inflammatory chemicals that attack healthy cells and tissue. In most JA cases, this causes joint inflammation, swelling, pain and tenderness, but some types of JA have few or no joint symptoms or only affect the skin and internal organs. Our guest on this week's episode is Effie K. who was diagnosed as a teenager.

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Factitious Disorder Imposed on Another (FDIA), also known as Munchausen Syndrome by Proxy (MSbP) is a very serious form of child abuse. The perpetrator, usually the mother, invents symptoms or causes real ones in order to make her child appear sick. Our guest today is Craig Lewis, not only survived the ordeal but he has also written a book on his experiences and is a Peer Counselor to help others.

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Radon is a radioactive gas that forms naturally when uranium, thorium, or radium, which are radioactive metals break down in rocks, soil and groundwater. People can be exposed to radon primarily from breathing radon in air that comes through cracks and gaps in buildings and homes. Because radon comes naturally from the earth, people are always exposed to it.

The U.S. Environmental Protection Agency and the Surgeon General’s office estimate radon is responsible for more than 20,000 lung cancer deaths each year in the U.S. When you breathe in radon, radioactive particles from radon gas can get trapped in your lungs. Over time, these radioactive particles increase the risk of lung cancer. It may take years before health problems appear.

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Our guest today is Amee Quiriconi the Blogger and Podcaster for "One Broken Mom" she spoke with us recently about Rheumatoid Arthritis and now shares with us how childhood trauma can develop into lifelong illnesses like Autoimmune, Cardiac problems and even Cancers! An extremely interesting topic that opens the doors between sociology, psychology and physical medicine.

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Post Traumatic Stress can be painful for the family as well as the person experiencing this disorder. Dr. Seth Kastle of WaKeeney, is a retired U.S. Army first sergeant and the author of the children’s books, Why Is Dad So Mad, and Why Is Mom So Mad, both which address how military families can cope with post-traumatic stress disorder.

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Do to overwhelming positive feedback and requests we are running this episode for TWO WEEKS! Featuring Bill Hennessey who had a cardiac event after boarding a Chicago Metra train and the two bystanders that weren't about to let these be his LAST train ride!

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Marc Coronel has dedicated his life to inspiring, motivating, and empowering others. At the same time, Marc has been battling kidney disease and talks with us today about dialysis. Kidney dialysis is temporary fix while a person waits for transplant.

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Rheumatoid arthritis (RA) is an autoimmune disease in which the body’s immune system – which normally protects its health by attacking foreign substances like bacteria and viruses – mistakenly attacks the joints. Our guest today is Amee Quiriconi the Blogger and Podcaster for "One Broken Mom"

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In this episode we discuss Mast cell activation disorder (MCAD) with Tara Notrica from New York. MCAD is an immunological condition in which mast cells inappropriately and excessively release chemical mediators, resulting in a range of chronic symptoms, sometimes including anaphylaxis or near-anaphylaxis attacks.

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Cerebellar slumping (aka cerebellar ptosis) occurs as a result of too much bone being removed around the foramen magnum that there is no longer enough bone to support the weight of the cerebellum. Today we speak again with Heidi concerning her Brain Slump diagnosis.

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Although we normally discuss a different diagnosis each week, we wanted to introduce some forms of Therapeutic Recreation from time to time since Ron & Lita both received their advanced degrees in TR Administration from Aurora University.

A study into the therapeutic benefits of scuba diving by students from the University of Sheffield’s Medical School published in the Journal of Disability and Rehabilitation under the title: 'Can scuba diving offer therapeutic benefit to military veterans experiencing physical and psychological injuries as a result of combat?' leads us to this week's episode. Jim Elliott, Founder and President of DiveHeart is here to talk about his organization, and the therapeutic benefits of SCUBA!

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A premature birth is a birth that takes place more than three weeks before the baby's estimated due date. In other words, a premature birth is one that occurs before the start of the 37th week of pregnancy. Premature babies, especially those born very early, often have complicated medical problems. Sheila talks about some of the medical challenges her premie twins have faced during their first 7 yrs.. Sheila is still a stay-at-home-mom due to the chronic health conditions her twins continue to fight. Never stopping to rest, she continues to find ways to help raise her family in-between tube feedings and doctors visits.

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Today we're talking with Travis Mills, a retired United States Army Staff Sergeant and recalibrated warrior! On April 10, 2012, Mills was critically injured by an improvised explosive device (IED), while on his third tour in Afghanistan. Travis is one of only five surviving quadruple amputees from the US military action in Iraq and Afghanistan. His message is one of hope and determination, but also humility and humor!

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We are speaking today with Christalle Bodiford. Christalle is an artist, advocate, writer, and an adventurer who lives with Epilepsy.

Seizures and epilepsy are not the same. An epileptic seizure is a transient occurrence of signs and/or symptoms due to abnormal excessive or synchronous neuronal activity in the brain. Epilepsy is a disease characterized by an enduring predisposition to generate epileptic seizures and by the neurobiological, cognitive, psychological, and social consequences of this condition. Translation: a seizure is an event and epilepsy is the disease involving recurrent unprovoked seizures. (https://www.epilepsy.com/learn/about-epilepsy-basics/what-epilepsy )

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In this episode we will discuss Myasthenia Gravis, an Autoimmune Disease affecting the neuromuscular system of the body with Tasha White, Director of a new Non-profit organization called My Walk with MG located in St. Louis, MO. The hallmark of Myasthenia Gravis is muscle weakness that worsens after periods of activity and improves after periods of rest. Certain muscles such as those that control eye and eyelid movement, facial expression, chewing, talking, and swallowing are often (but not always) involved in the disorder. The muscles that control breathing and neck and limb movements may also be affected.

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People with bipolar disorders have extreme and intense emotional states that occur at distinct times, called mood episodes. These mood episodes are categorized as manic, hypomanic or depressive. People with bipolar disorders generally have periods of normal mood as well. Bipolar disorders can be treated, and people with these illnesses can lead full and productive lives.

Kitt joins us today to discuss her advocacy in this field and how she lives day to day with Bipolar Disorder.

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In this episode we will discuss pre and post natal pelvic floor therapy with Erin Glace.

Erin Glace PT, MSPT, PRPC is a pelvic health specialist with over 20 years of experience treating women with pelvic floor problems. Pelvic floor damage can occur during pregnancy, during childbirth or post-partum, and may be expressed by symptoms such as urinary incontinence, fecal and gas incontinence, sexual dysfunction, pelvic organ prolapse and chronic pelvic pain.

Pelvic floor muscle training exercises are recommended for:

Women with urinary stress incontinence
Men with urinary stress incontinence after prostate surgery
People who have fecal incontinence

Pelvic floor muscle training exercises can help strengthen the muscles under the uterus, bladder, and bowel (large intestine). They can help both men and women who have problems with urine leakage or bowel control.

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In this episode we will discuss Myasthenia Gravis, an Autoimmune Disease affecting the neuromuscular system of the body with Meridith O'Connor.

Writer, speaker, and community leader, Meridith is a health and wellness advocate.

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In this episode we will discuss Chiari Malformation. It is most often caused by structural defects in the brain and spinal cord that occur during fetal development. This can be the result of genetic mutations or a maternal diet that lacked certain vitamins or nutrients. This is called primary or congenital Chiari malformation. It can also be caused later in life if spinal fluid is drained excessively from the lumbar or thoracic areas of the spine, to traumatic, injury, disease, or infection. This is called acquired or secondary Chiari malformation and is a rarer form.

Our guest on today's show is Heidi Elise Marquis.

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In men, urine flows from the bladder through the urethra. BPH is a benign (noncancerous) enlargement of the prostate that blocks the flow of urine through the urethra. The prostate cells gradually multiply, creating an enlargement that puts pressure on the urethra -- the "chute" through which urine and semen exit the body.

As the urethra narrows, the bladder has to contract more forcefully to push urine through the body.

Over time, the bladder muscle may gradually become stronger, thicker, and overly sensitive; it begins to contract even when it contains small amounts of urine, causing a need to urinate frequently. Eventually, the bladder muscle cannot overcome the effect of the narrowed urethra so urine remains in the bladder and it is not completely emptied. (Credit: WEBMD )

Our guest today is a 60 year old Chicago suburb father and grandfather who has recently undergone a procedure to correct the BPH he had been living with for almost a decade.

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In this episode we discuss the diseases that continue to take the lives of the 1st Responders of the 9/11 attack. We are grateful to the Chief Medical Officer for the NYFD, Dr. David Prezant for his time with us during the interview. Dr. Prezant is the foremost authority on the complications of 9/11 that continue to plague the First Responders of the attack.

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In this episode we will discuss Vectors. Specifically MOSQUITOES!

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In this episode we will discuss Congenital Heart Defects with Derek Canas, AKA "D-Rek"

Some infants are born with the Great Arteries, (those attaching directly to the heart) in opposite positions, this is called Transposition. Transposition of the great arteries changes the way blood circulates through the body, leaving a shortage of oxygen in blood flowing from the heart to the rest of the body. Without an adequate supply of oxygen-rich blood, the body can't function properly and your child faces serious complications or death without treatment. Listen now to hear D-Rek's story!

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In this episode we are talking about Timothy Syndrome with our guest Courtney Waller. Timothy syndrome is a rare genetic disorder that affects the heart and several other organs. Timothy syndrome is also associated with abnormalities of fingers or toes that are fused together through webbed skin between the digits (cutaneous syndactyly), specific facial features, a weakened immune system, developmental delays and episodes of low levels of sugar in the blood (hypoglycemia). Courtney Waller is the co-Founder of Timothy Syndrome Alliance, and mom to a 5 year old daughter with the condition.

She has been a legislative advocate for the rare disease community for the past five years. Primarily working on legislation by state. She is the founder and principal of Policy Served Rare, a patient centered think tank focusing on policy that focuses on health and mental health care for the rare disease community.

Website: www.SADS.org/TSA

Twitter: @Timothy Syndrome

Facebook: Policy Served Rare @policyservedrare

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In this episode we will discuss Migraines with Epilepsy, sometimes called Migralepsy with Barby Ingle. Migralepsy is a rare condition in which a migraine is followed, within an hour period, by an epileptic seizure. Because of the similarities in signs, symptoms, and treatments of both conditions, such as the neurological basis, the psychological issues, and the autonomic distress that is created from them, they individually increase the likelihood of causing the other. However, also because of the sameness, they are often misdiagnosed for each other, as migralepsy rarely occurs.

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In this episode we will discuss Complex Regional Pain. Our Guest, Barby Ingle returns from a previous episode on Endometriosis.

Complex regional pain syndrome (CRPS) is a chronic (lasting greater than six months) pain condition that most often affects one limb (arm, leg, hand, or foot) usually after an injury. CRPS is believed to be caused by damage to, or malfunction of, the peripheral and central nervous systems. The central nervous system is composed of the brain and spinal cord; the peripheral nervous system involves nerve signaling from the brain and spinal cord to the rest of the body. CRPS is characterized by prolonged or excessive pain and changes in skin color, temperature, and/or swelling in the affected area.

CRPS is divided into two types: CRPS-I and CRPS-II. Individuals without a confirmed nerve injury are classified as having CRPS-I (previously known as reflex sympathetic dystrophy syndrome). CRPS-II (previously known as causalgia) is when there is an associated, confirmed nerve injury. As some research has identified evidence of nerve injury in CRPS-I, it is unclear if this disorders will always be divided into two types. Nonetheless, the treatment is similar.

CRPS symptoms vary in severity and duration, although some cases are mild and eventually go away. In more severe cases, individuals may not recover and may have long-term disability.

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In this episode we will discuss endometriosis. Endometriosis is a disease in which tissue similar to the lining of a woman's uterus grows in other places in the body. It is one of the most common gynecological diseases, and its primary symptoms include pain and infertility. Our guest today is Barby Ingle, a chronic pain warrior!

Barby is an author, reality personality, and lives with reflex sympathetic dystrophy (RSD), migralepsy, endometriosis and other pain disorders. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation.

She is also a motivational speaker and best-selling author on pain topics. Her blog, reality shows and media appearances are used as a platform to help her become an ePatient advocate, and she now travels the country attending healthcare conferences, speaking publicly, sharing her story, educating and advocating for patients across the globe. She has received 19 accommodations over the years for her advocacy work

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This week's we speak with Kathy about her ongoing battle with Multiple Sclerosis. Multiple sclerosis, or MS, is a long-lasting autoimmune disease that can affect your brain, spinal cord, and the optic nerves in your eyes. It can cause problems with vision, balance, muscle control, and other basic body functions.

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In this episode we will discuss IBD or Inflammatory Bowel Disease. IBD covers a group of disorders in which the intestines become inflamed (red and swollen), probably as a result of an immune reaction of the body against its own intestinal tissue.

Our guest, Sharon, will explain how IBD has affected her life so far and what she is doing to manage the symptoms

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In this episode we discuss adrenal insufficiency with Sarah.

There are three types; primary, secondary, or tertiary adrenal insufficiency.

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In this episode we will discuss Fibromyalgia with Norman. Fibromyalgia is found in both men & women, with the greater percentage of the cases in the later. Gender-based stereotyping may be partially to blame for the disorder being seen less often in men. If that is the case, let's help break that stereotype now!

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In this first part of a two part series we discuss Fibromyalgia with Kristal Kent. Kristal is a female Veteran and next week we will be interviewing a male Veteran with Fibro.

Fibromyalgia, although the term might be very well know to many has a few surprising symptoms. These two Vets will be discussing the symptoms they deal with on a day to day basis.

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In this episode we will discuss Sickle Cell Disease. We normally interview a guest but will do a forum among ourselves. That is what this episode will be.

This being Sickle Cell Awareness Week, we thought it prudent to share some facts with our listeners.

Sickle cell disease (SCD) affects millions of people throughout the world and is particularly common among those whose ancestors came from sub-Saharan Africa; Spanish-speaking regions in the Western Hemisphere (South America, the Caribbean, and Central America); Saudi Arabia; India; and Mediterranean countries such as Turkey, Greece, and Italy.

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In this episode we will discuss men's health, specifically testicular cancer. Usually found in younger men aged 15 to 35 and only 1 in 250 will ever develop this disease Because testicular cancer usually can be treated successfully, a man’s lifetime risk of dying from this cancer is very low: about 1 in 5,000.

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In this episode we will discuss heat injuries and dehydration. As summer jumps in with both feet, so must we! Please listen, share, and take care of one another.

There will not be a guest this week, we will discuss the topic in forum. We hope you will listen and share this important topic.

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In this episode we will discuss Breast Cancer with Bonita.

Breast cancer is the most common cancer in American women, except for skin cancers.

Currently, the average risk of a woman in the United States developing breast cancer sometime in her life is about 12%.

This means there is a 1 in 8 chance she will develop breast cancer. This also means there is a 7 in 8 chance she will never have the disease.

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In this episode we will discuss Type 1 Diabetes with Maya Grace Rose, formerly known as: Caitlin Rose. Type 1 diabetes (previously called insulin-dependent or juvenile diabetes) is usually diagnosed in children, teens, and young adults, but it can develop at any age.

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In this episode we will discuss HIV with D-Rek. HIV or Human Immunodeficiency Virus can be spread by blood transfusions, which was the case for D-Rek, who had heart surgery as an infant.

HIV stigma is negative attitudes and beliefs about people with HIV. It is the prejudice that comes with labeling an individual as part of a group that is believed to be socially unacceptable. Let’s Stop HIV Together raises awareness that we all have a role to play in stopping HIV stigma. When we support people with HIV, we make it easier for them to live healthy lives.

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In this episode we will discuss heart stents as a way of repairing clogged arteries. Stents help keep coronary arteries open and reduce the chance of a heart attack. Our guest today is Mike M., a retired Fire Chief from the Suburbs of Chicago.

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Sarcoidosis (pronounced SAR-COY-DOE-SIS) is an inflammatory disease characterized by the formation of granulomas—tiny clumps of inflammatory cells—in one or more organs of the body. When the immune system goes into overdrive and too many of these clumps form, they can interfere with an organ’s structure and function. When left unchecked, chronic inflammation can lead to fibrosis, which is the permanent scarring of organ tissue. This disorder affects the lungs in approximately 90% of cases, but it can affect almost any organ in the body. Despite increasing advances in research, sarcoidosis remains difficult to diagnose with limited treatment options and no known cure.

Today's episode we are speaking with Frank Rivera from New York.

Frank founded Sarcoidosis of Long Island in 2012. In 2011 Frank was diagnosed with Sarcoidosis after being misdiagnosed with lung cancer for 7 years prior. Since opening Sarcoidosis of Long Island he has been a local, state and federal advocate for Sarcoidosis. Frank strives to raise awareness for Sarcoidosis nationally, but specifically in the government sector. He has represented the Rare and Sarcoidosis community as a speaker at two Congressional briefings for Sarcoidosis.

Frank is also a WEGO Health Patient Leader, the National Ambassador for Foundation for Sarcoidosis Research, a Global Genes RARE Foundation Alliance Member & Advocate, an ambassador for The EveryLife Foundation and a Working Group Member and Long Island Liaison for National Organization for Rare Diseases (NORD). Named RUGD Ambassador for Illumina October 2017. Frank was named "Person of the Year " in Brookhaven Town.

Frank organized RareNY in 2016, to raise awareness for Rare Diseases in the state of New York. He organized “A Day for Rare Diseases” on October 15th, 2016 in Long Island NY, in partnership with Global Genes, to raised awareness for all 7000+ rare diseases. In recognition of Frank’s efforts, Suffolk County and the town of Brookhaven officially declared October 15th “A Day for Rare Diseases”.

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In this episode we will discuss phobias in the studio. When a person has a phobia, they will often shape their lives to avoid what they consider to be dangerous. The imagined threat is greater than any actual threat posed by the cause of terror.

The episode was suggested by a fellow Podcaster,

Nicole Clark at "The Verdict's In" Podcast.

Thank you Nicole, I hope this helped!

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