Mogil's Mobcast-A Scleroderma Chat: Recent Episodes
Ann
The goal of my podcast is to have a central place for people afflicted with Scleroderma and a place for their families and friends to be informed by specialists in either Scleroderma or autoimmune topics. I will cover a wide range of topics like nutrition, medications, vitamins, and lifestyles. I will also showcase stories from others affected by Scleroderma and how they have dealt with the disease. For additional information you can visit my website-Mogilsmobcast.com, or follow me on Instagram-mogilsmob and Facebook mogilsmob
Today’s guest is the incredible Dr. Sara Reardon, a renowned pelvic floor physical therapist, author, and founder of V-Hive, a groundbreaking app for pelvic health. I wanted to have Dr. Reardon on the show because nearly 80% of people living with scleroderma are women, and many face challenges such as urinary issues and fecal incontinence topics we don’t talk about enough. Dr. Reardon offers thoughtful, practical, and empowering ways to address these concerns. Her book, Floored, is full of helpful guidance, and even at 66, I found myself learning so many things I wish I’d known years ago.
Today I sit down with Dr. Reza Movahed, an oral and maxillofacial surgeon who’s making a real impact in the scleroderma community. As scleroderma patients we know how this disease affects the mouth. Dr. Movahed helps patients regain function and comfort, and the surprising role sleep plays in maintaining oral health. Dr. Movahed was a crowd favorite at our July conference.
Today’s guest is Dr. Laura Hummers, a rheumatologist and co-director of the Scleroderma Clinic at the Johns Hopkins Scleroderma Center. In our conversation, we dive into the different phenotypes observable characteristics of scleroderma, as well as the three major antibodies commonly found in patients and how they aid in diagnosis. This episode is packed with valuable insights and information you won’t want to miss.
Today’s guest, Scleroderma Warrior Dr. Joseph Washington, is the definition of resilience and perseverance. His journey began with Raynaud’s symptoms in junior high, but it wasn’t until pharmacy school that he was diagnosed with diffuse systemic sclerosis. So much has happened in just four years since then, and I can’t wait for you to hear his inspiring story.
Today’s guest is another incredible scleroderma warrior, Natalie Puccio. As many of you know, no two scleroderma journeys look exactly alike. Natalie and I discovered we had so much in common—both personally and in our symptoms—which made our conversation especially meaningful. One big difference, though, is that Natalie was diagnosed at just 24 years old and went on to have three children while living with scleroderma. She’s an amazing resource for anyone navigating questions or concerns about pregnancy and parenting with this condition. If that’s something you’d like support with, let me know and I’ll be happy to connect you with her.
Today’s guest is rheumatologist Dr. Jessica Gordon. Together, we explore two topics that every scleroderma patient is familiar with skin and Raynaud’s.Dr. Gordon explains the three stages of skin progression in scleroderma, the challenges patients often face, and the treatments available. We also touch on Raynaud’s our discussion may be shorter, but it’s filled with helpful insights.I truly enjoyed this conversation with Dr. Gordon, and I know you will too.
Today’s guest is another incredible scleroderma warrior. Kristina Hamilton was diagnosed in 2022 at just 32 years old, while raising three young children. Like so many women, she was initially told her symptoms were simply due to stress. Not long after, she found herself hospitalized, her weight dropping from 120 to 68 pounds. Her life changed almost overnight. Yet Christina’s story is one of resilience, rising above her diagnosis to share her journey and inspire others. Join us as we hear how she faced her toughest battles, found her voice, and even landed in the pages of People magazine.
Today’s guest is Dr. Ebru, a dynamic force in the world of skincare. With a background in molecular medicine, immunology, and cosmetic chemistry, she created her skincare line, AveSeena, from the ground up. She was one of the first to connect inflammation, “inflammaging,” the immune system, and the skin microbiome in the development of her products. Beyond her scientific expertise, Dr. Ebru brings an upbeat energy and a wealth of valuable insights that you won’t want to miss.
Today’s guest is Shubhda Chaube. Shubhda is a scleroderma warrior who was diagnosed just a year ago on her 47th birthday, no less. Despite being early in her journey, she’s jumped in with both feet: attending multiple support groups, including one based in India, and starting a thoughtful blog called Calm Core Cozy Layer. She’s also working on a powerful project called From Patient to Pattern Seeker. Let’s learn more about her journey and the projects she is working on.
Shubhda's blog, Calm, Core & Cozy Layers
As many of you know, I love to move and I’m always eager to share that energy. But I also understand that for some, especially those living with scleroderma, exercising can feel overwhelming. That’s why I’m thrilled to be joined by Will Gregory, a physiotherapist with over 20 years of experience working with the scleroderma community. Will shares powerful insights on why fatigue, not pain, is often the biggest barrier to physical activity. In this episode, he offers practical, doable strategies to stay active, including exercises for the hands and mouth. Whether you’re just starting out or looking for new ideas, you’ll find something valuable here.
Today, we have an inspiring story of resilience, purpose, and advocacy. Our guest is Perry Bray, he was diagnosed in 2018 with diffuse systemic sclerosis, Perry faced life-altering changes, including stepping away from his beloved football and ministry work. But rather than let the diagnosis define him, Perry chose to redefine what it means to live with this rare disease. He became a powerful voice in the scleroderma community, joining the Renew Program and the Peer Mentor Program through the University of Michigan. He also shares his experiences and insights through his personal blog, creating a space of hope and connection for others. Perry’s journey is one of courage, adaptation, and impact and today, we get to hear it in his own words.
When you hear the term palliative care, what comes to mind? I’ll admit I used to think it meant something very different. But today’s guest, Dr. Shannon Herndon, helped reshape my understanding. Dr. Herndon joins us to talk about how palliative care can support scleroderma warriors not just at the end of life, but throughout the journey of living with this disease.You may remember a recent survey circulating in our community Dr. Herndon was behind it. The goal? To better understand how palliative care can be woven into the fabric of scleroderma care. We had a thoughtful conversation, and I’m excited to share it with you.
Today’s guest is Carolyn Haeler, the founder of a delicious gluten-free cookie brand, called MIGHTYLICIOUS and someone with an inspiring story to tell.Carolyn lives with celiac disease, and in this episode, she shares her journey: from navigating the challenges of her diagnosis to the surprising lessons she learned along the way. Her desire for a truly good gluten-free cookie led her to create her own and eventually, her own line of cookies and now even gluten-free flour. I learned so much not just about celiac disease, but also about what it takes to go from baking in your kitchen to running a commercial bakery. Spoiler: it’s more complicated than you think.And yes, the cookies are fantastic.
Enjoy the episode!
What an incredible milestone! What began as a simple idea during the pandemic, something to keep me busy in retirement and a way to give back to the scleroderma community has grown into something truly meaningful. I’ve been deeply moved by how warmly this podcast has been received. In this special episode, I want to honor that spirit by reconnecting with the incredible scleroderma warriors who generously shared their stories. Let’s check in and see how they’re doing. Let’s begin.
If you’ve been following along, you know gut health and digestive issues are some of my favorite topics. That’s why I was especially excited to sit down with today’s guest, Allison Samon, a functional nutritionist who takes a holistic approach to health—right up my alley. In this episode, we focused on a major issue so many of us deal with: fatigue. Allison brought such great energy to the conversation (ironic, right?) and shared some really insightful ways nutrition can support better energy levels. It was a fun and fascinating chat.
Her Reboot from Chronic Illness Cleanse (that she referenced during the episode): https://detoxwithallie.com/
And her free gift (that she also mentioned): https://www.chronicillnessrelief.com/
Today, I’m joined by Dr. Elizabeth Ortiz, a rheumatologist who takes a holistic approach to treating scleroderma—something that deeply resonates with me.Even after living with this disease for 25 years, I walked away from this conversation with new insights, and I know you will too. Tune in and discover valuable perspectives on managing scleroderma!
I had an engaging and insightful conversation with rheumatologist, Dr. Michael York, a highly knowledgeable expert with a great sense of humor, on my latest podcast episode. We explored the key challenges affecting the hands, including Raynaud’s, digital ulcers, and calcinosis, and their impact on patients. Dr. York also provided a fascinating explanation of why scleroderma research presents such unique difficulties.
The gut microbiome has become one of my favorite topics, especially since, like many of my fellow scleroderma warriors, I experience stomach issues. Today, we dive deep into the intestinal challenges that come with our diagnosis with Dr. Joy Liu. She provides an in-depth and insightful discussion, breaking down these complex issues with great clarity.
Today’s guest is Rashmi Bhasin, a true scleroderma warrior. Like many women seeking a proper diagnosis, she was repeatedly told her symptoms were due to hormones or stress. As a result, it took four years to finally get the correct diagnosis. But rather than letting that struggle define her, she turned it into a force for good. Today, she leads Scleroderma India, advocating for others facing similar challenges. Tune in to hear her inspiring journey firsthand!
Today’s guest is scleroderma warrior Emily Radican. Over the years, Emily has been diagnosed with a range of autoimmune diseases, and five years ago, Limited Scleroderma became part of her journey. Many of her health challenges have revolved around her gut, which inspired her to pursue a degree in nutrition. Now, she’s working toward her Ph.D. in Nutritional Science and Food Chemistry. Join us as we dive into her story, her autoimmune journey, and her exciting plans for the future after graduation!
Get ready for a fascinating deep dive into one of my favorite topics—sleep! In today’s episode, we’re joined by Dr. Sabra Abbott, an expert in all things sleep-related. Together, we explore the three critical stages of sleep, the unique challenges scleroderma patients face when it comes to getting quality rest, and practical strategies to improve your sleep. By the end of our conversation, you’ll feel informed, inspired, and maybe even a little more well-rested!
Today, we have an incredible guest joining us—rheumatologist Dr. David Collier. With 28 years as a Professor of Medicine at the University of Colorado Medical School and 25 years leading the scleroderma clinic, Dr. Collier is a true expert in the field. Currently, he’s consulting with Kyverna Therapeutics, working on groundbreaking (CAR) T-cell therapy.
We’ve all been hearing the buzz about this innovative treatment for scleroderma, and today, we’re diving in to learn what it’s all about. Get ready for a fascinating science lesson—you won’t want to miss this! Let’s get started!
Today, I’m thrilled to introduce Dr. Cristina Padilla, a remarkable physician I had the pleasure of meeting at a recent conference. In this episode, we delve into the work being done at the Pittsburgh Scleroderma Center, where Dr. Padilla focuses on translational research into interstitial lung disease. Through our conversation, you’ll not only learn about her invaluable contributions to the field but also hear her deep passion for advancing scleroderma research and improving patient care. Let’s get started!
Today’s guest is Melissa Marquis, who shares her incredible journey of perseverance and advocacy. It took 10 years for Melissa to receive a diagnosis of undifferentiated connective tissue disease—a condition where the immune system attacks connective tissues, but the symptoms and lab results don’t fully align with any specific connective tissue disease. Three years later, she was diagnosed with limited cutaneous systemic sclerosis. After years of uncertainty and navigating frustrating symptoms, Melissa turned her experiences into a resource for others. She authored the book Invisible: A Nurse-Turned-Patient’s Resource to Living Well with Autoimmune Disease to support those facing similar challenges in their quest for answers.
What an inspiring guest we have today! Allison Zhang’s story is a testament to resilience and determination. Living 24 years with scleroderma is no small feat, and founding the first national scleroderma NGO in China shows her incredible dedication to helping others in similar situations.
Through this conversation, we’ll not only get a glimpse into her personal journey of managing scleroderma since childhood but also learn about her efforts to advocate for and empower the scleroderma community in China. Let’s dive in and uncover how Allison has turned her challenges into a platform for change and hope!.
In today’s episode, I’m joined by Danielle Rice, a clinical and health psychologist whose PhD research zeroed in on a unique perspective: how to support caregivers of scleroderma patients. Believe it or not, before Danielle’s work, there had only been one small study on this crucial topic! We often overlook how scleroderma affects not only the patients but also their loved ones. Danielle has done incredible work to bring much-needed support to caregivers, and today, she shares insights on the impact they face and the ways not to feel isolated.
Today, I’m thrilled to chat with Dr. Deanna Baker Frost—whom I had the privilege of meeting at the National Scleroderma Conference. When I asked her to join me on the podcast, she agreed enthusiastically, requesting a topic that would be impactful for patients. I suggested osteoporosis, given that 80% of scleroderma patients are women, and 80% of the estimated 10 million Americans with osteoporosis are women, too. In this episode, we dive into everything osteoporosis. Buckle up—there’s a lot to learn!”
Today, I talk with Dr. Sean Fortier, a specialist in pulmonary medicine. Since more than 40% of scleroderma patients show evidence of interstitial lung disease, I thought it was important to discuss pulmonary fibrosis and pulmonary hypertension. Dr. Fortier and I also discuss his research, which I found very encouraging—and I believe you will, too.
In the last episode, you heard Dr. Shah discuss autologous stem cell transplants. In today’s episode, you’ll meet Kim Rodning, the first non-trial recipient of an autologous stem cell transplant at Duke University. Like many scleroderma warriors, Kim remains positive and upbeat, even in the face of adversity. Her story is truly heartwarming.
Today's guest is Dr. Ankoor Shah. He is the Director of the Duke Scleroderma Clinic. In our episode today, we discuss his clinic and what it has to offer to scleroderma patients. We then dive into the main topic of our talk, stem cell transplant. I learned so much about what stem cell transplant involves and how it has helped the scleroderma community.
Today's guest is Terri Pilawa. Terri started feeling ill in 2008 and was finally diagnosed correctly after 4 years of not knowing what was wrong in 2012 with Idiopathic Pulmonary Fibrosis. She was told she needed a lung transplant. In 2015, she had a successful double lung transplant. As a part of her journey she became involved with the One Breath Foundation and is now the CEO. Let's hear about both her IPF journey and her involvement in the One Breath Foundation.
Today's podcast is with Ezra Halsted who was diagnosed with scleroderma at the age of 16. It was very interesting to hear the perspective of someone who was diagnosed young and how that changed her youth.
Today's guest is Jeremy Quinby. Jeremy is an integrative health practitioner and educator, Certified Craniosacral Therapist, Nationally Certified Massage Therapist, and Certified Movement and Post-rehab Specialist. In today's episode, we discuss what craniosacral therapy is and how it can help scleroderma patients as well as others with pain.
Today's guest is Yen Chen. Yen is a health behavioral researcher in the Department of Physical Medicine and Rehabilitation and Rheumatology Division at the University of Michigan. Yen is doing a study called Brain Boost program which deals with cognitive dysfunction or brain fog. Today we talk about the definition of brain fog, general causes of brain fog, and how it pertains to scleroderma patients. We also cover activities that can be done to help if you're having brain fog. Lots of great information.
Today's guest is Ilaria Galetti, a scleroderma warrior for over 27 years and currently awaiting a lung transplant. Like many scleroderma warriors she is an advocate for the disease. Ilaria is the Vice President of the Federation of European Scleroderma Associations FESCA. Listen to hear about her journey and her advocacy work.
Today’s topic is on the evolution of scleroderma. Dr. Medgser joins us in this discussion as he is a rheumatologist who practiced for 46 years and is currently retired. He started his interest in rheumatology at the University of Pittsburgh, which was the first institution to have a scleroderma center. It was here that Dr. Medgser met and worked with Dr. Rodnan, who is considered the "father of scleroderma”. It was really interesting to hear how practices and diagnosis has changed over the years. And what still needs to be done to help scleroderma patients.
Today’s guest is Jim Stempel. Jim has been a scleroderma warrior for almost 2 decades. For him scleroderma attacked his lungs, resulting in a lung transplant in 2018. He then decided to retire which led him to volunteer. Jim is doing wonderful advocacy for the scleroderma community. Listen to hear his journey and how is giving back.
Today's guest is Tami Yap. She is an oral medicine specialist. Tami deals with everything in the mouth except the teeth and gums. She is the connection between dentistry and medicine. Today we talk about 3 major concerns for scleroderma patients: the changing of the mouth's elasticity, changes in saliva, and whether the teeth will be affected by these changes.
Today's guest is Dr. Afton Hassett. She is an Associate Professor and the Director of Pain and Opioid Research in the Department of Anesthesiology at the University of Michigan. She recently published a book called Chronic Pain Reset, 30 Days of Activities, and Skills to Help You Thrive. In our discussion, she explains the different types of pain, the different domains within the 30 activities, and samples of activities to help with chronic pain. The activities are so helpful.
Today’s guest is Dr. Beth Vukin. Beth is a Scleroderma warrior and a pediatric doctor. Beth was diagnosed recently but has had signs for 3 years. We discuss how, even as a doctor, it is hard to diagnose Scleroderma.
Today’s guest is Dr. Julia Speirings. Dr. Speirings is a rheumatologist from the Netherlands. She is doing a research project on the hands called Handsome. I was so excited to know that there was a project that deals with hands. My hands are a source of most of my frustration with Scleroderma. Listen to learn all about this project.
Today's guest, Tara Haneveld, received the same present as I did for my 40th birthday, a diagnosis of systemic scleroderma. And just like how my symptoms started to manifest with swelling fingers, hers did as well. Similarly, we both have watermelon stomach! Luckily, she was diagnosed within 3 months of her swelling. She says her being in the health field helped her quick diagnosis. As her scleroderma journey continued, Tara has taken on the role as Deputy Chair | Queensland Representative Scleroderma Australia.
Today's guests are Shelly Mathis and Teresa Barnes. They are both are integral parts of an organization called PF (Pulmonary Fibrosis) Warriors. Since the lungs are impacted in roughly 80% of all patients with scleroderma, I thought meeting both guests and learning about their organization was so important.
Today's guest is scleroderma warrior Liz Penwill. In the 2 years since Liz has been diagnosed, her life has been turned upside down. With all the changes she has had to endure, she has kept a positive attitude. Her laugh is contagious and she brings a great upbeat perspective to this disease.
In today's episode you'll meet Emma Blamont, she is the head researcher at Scleroderma and Raynaud’s UK. Emma gives us the history of SRUK, what the organization offers, the research philosophy, and what SRKU focuses on when choosing their research.
Today's guest is Dr. Duncan Moore from the Northwestern Scleroderma Center. Our topic today is classification and diagnosis of scleroderma. There is a classification point system that rheumatologists can use to help determine diagnosis. Dr. Moore talks through the classification system. We discuss the differences between diffuse cutaneous systemic Sclerosis and limited cutaneous systemic Sclerosis. We end with Dr. Moore and the scleroderma center offering to coordinate with your local rheumatologist to help with diagnosis and treatment.1. The 2008 paper by Koenig et al. which describes various rates of progression from Raynaud's phenomenon to systemic sclerosis. Free to access. [https://onlinelibrary.wiley.com/doi/epdf/10.1002/art.24038]
- The 2013 ACR/EULAR Classification Criteria for Systemic Sclerosis. Free to access. [https://ard.bmj.com/content/72/11/1747.long]
Today’s episode we discuss the importance of stretching the hands, mouth and face. Janet also gives some stretching activities for you to do. We also talk about gadgets that can help warriors in everyday living, with Raynaud's and ulcers.
Here are some links for her stretches:http://www.scleroderma.org/site/DocServer/Form_16c_low_res.pdf?docID=19809&AddInterest=1281https://www.selfmanagescleroderma.com
In today’s episode I chat with Glen and Elizabeth Copeland. Glen was diagnosed with Systemic Scleroderma in 2017. This is my first episode interviewing a warrior and their partner. It was so fascinating to get the perspective of both the patient and the caregiver.
Today’s guest is Dr. Carrie Richardson. Dr. Richardson is a rheumatologist and the co-director of the Northwestern Scleroderma Program. It was wonderful to learn about Northwestern’s Scleroderma Program. We discussed calcinosis, which many will know is a huge problem for me. We also talked about myositis, which I knew little about. She talked about the relationship between the esophagus and interstitial lung disease, a very interesting study. We end our talk on osteoporosis, and how it affects scleroderma warriors.
Today on my podcast I talk with 3 young women, Giovanna who has a Doctorate in Occupational Therapy, Kate a 2nd year Medical Student at Albany Medical School and Torie a 4th year Pharmacy Student at Albany College of Pharmacy and Health Sciences. These women participated in the interdisciplinary education event sponsored by the Stephen's Foundation. The Stephan’s Foundation provides education on scleroderma. After attending the event, all 3 decided to research scleroderma in their respective fields.
Today's guest is Dr. Parina Aggarwal. Dr. Aggarwal is a practicing sleep medicine physician. We talk about what sleep is, and why we need it. Then we go into detail about the 4 stages of sleep. We next move into information that relates directly to patients with scleroderma, we talk about what features of scleroderma may cause greater sleep disruption and are there certain sleep disorders that may be more prevalent in scleroderma. We also talk about ways to sleep better and medications and supplements.
Today's guest is Dr. Todd Brennan. Dr. Brennan is a podiatry specialist from Florida. Today we discuss issues with feet due to scleroderma, some complications that happen to the feet, medications, and what a scleroderma warrior can do to help with those feet issues. There is a lot of practical advice.
Today's guest is Cosette Wu. Cosette is the founder of Scleroderma United. Their mission is connecting and empowering scleroderma warriors around the world. Cosette started the organization in high school after her grandfather died of scleroderma. It's a wonderful story!
Today's guest is scleroderma warrior Erion Moore. I was lucky enough to meet Erion at a leadership conference in New Orleans this October. He and I, unbeknownst to either of us, are on the same committee. It was so much fun to meet him in person. Erion is as witty and funny in person as he is as a guest.
Today's guest is film producer Christy McCaffrey. Christy's mom passed away from scleroderma. After the loss, she created a non-profit called Project Scleroderma. In our conversation, we talk about her mom's short journey with scleroderma, her mission with Project Scleroderma, and the films she has produced.
Today’s guest is Elaine Furst. Elaine is a retired nurse and a nurse-educator. Our topic today is scleroderma and sexuality. We spend some time talking about the definitions of sensuality and sexuality and the importance of both. Our conversation transitions to how to deal with chronic illness and sexuality.
Today’s guest is my rheumatologist Dr. Jerry Molitor. Dr. Molitor, acting chief of Rheumatology at the VA Hospital-Minneapolis and is an Associate Professor of Medicine in the Division of Rheumatic and Autoimmune Diseases at the University of Minnesota Medical School. We had a wonderful conversation and started our discussion on the CONQUER Registry (an acronym for Collaborative National Quality and Efficacy Registry), which is a National Scleroderma Patient Registry. We also discussed the Clinical Study Consortium and ideas on how to get involved with trial studies.
Today's guest is a scleroderma warrior, her name is Melanie Gornick. We begin our conversation with her journey with scleroderma. One part of our discussion is focused on the ups and downs of her career and how she started a non profit, Scleroderma Warriors, with a settlement from her former employer. Let‘s listen to her journey and what her foundation's mission is all about.
Today’s guest is Jameela Goudarzi. She is a family nurse practitioner specializing in primary care and family medicine at the Medical University of South Carolina. The topic today is self care, during our conversation we talk about what self care is and some basic needs we all have. We then talk about ideas of what we can all do to meet those basic needs. Next we talk about self management classes that are offered. Finally two stories of how people with chronic illnesses took the ideas of basic needs and used them in their lives.
Today is a returning guest, Dr. Michael Hughes. In our discussion we talk about 2 topics. One is on the kidneys and how it affects scleroderma patients and the 2nd topic is on neurological problems and neuromuscular manifestations associated with scleroderma. It was another great conversation and I learned so much. For more background information on Dr. Hughes, you can either go back to episode 39 or go to my website.
Today's guest is Heather Franz. Heather is a scleroderma warrior. She is also the executive director of the patient safety and clinical competency at Albany Medical Center. Heather volunteers with the Steffens Scleroderma Foundation interpersonal educational event in teaching the art of interviewing and active listening. Let's learn more about her and all that she does.
Jeffrey is currently the Director of Professional Affairs and an Associate Professor of Pharmacy Practice at the Albany College of Pharmacy and Health Sciences. Today's episode is about IPE, Interprofessional education. Until recently, I had no idea what IPE was or how it worked. After being invited to be part of Steffen's IPE experience, which was fantastic, I now realize that this type of IPE program should be available to all college students working in the health sciences.
Today's episode is with scleroderma warrior Donna Dinkin. I love chatting with my fellow warriors. I learn so much, especially what we share in common. Donna starts her journey with her disease in 2011 at age 50 when she is diagnosed with Graves disease. A lot of us know how hard it is to get an accurate diagnosis. Donna takes us through her journey, ending our conversation with her memoir: Thursdays with Eugene: A Memoir Of Living While You Think You're Dying. A wonderful book in which I think we can all find a relatable part.
Today’s guest is Daniel Kayajian. He is a speech pathologist specializing in voice and swallowing disorders as well as air issues. Dan talks about the 3 stages of swallowing, signs of swallowing issues, how to diagnose swallowing issues, problems that may occur with scleroderma patients, and some suggestions to help with those issues. If you'd like more information or the information on acidity levels in foods, please email me at: mogilsmobcast@gmail.com
Today I continue my talk with Michelle Morgan. In this episode, we focus on commonly seen gastrointestinal conditions that affect those with scleroderma. She covers dry mouth, swallowing, GERD (Gastroesophageal Reflux Disease), Gastroparesis, SIBO (Small intestinal bacterial overgrowth), diarrhea, constipation, and fecal incontinence. We end our discussion on Low FODMAP Diets. We covered a lot and we could have talked much longer!
Today I talk with Michelle Morgan, she is a registered dietician nutritionist. Michelle had so much to share about nutrition that this will be a 2 part episode! In part 1, we cover the foundations of nutrition. The 2nd part will be geared towards general nutritional ideas for the gastrointestinal manifestations that occur in systemic scleroderma warriors.Disclosure: The information and any opinions are based on Michelle's own knowledge and experience as a registered dietitian nutritionist and do not express the opinions or views of my employer. Also, nutrition recommendations are highly individualized. As such, it is recommended that you seek guidance from a registered dietitian nutritionist and your healthcare team as a medical nutrition therapy plan should be tailored to meet your needs. To find a registered dietitian nutritionist visit near you or offering telehealth services visit: https://www.eatright.org/find-a-nutrition-expert
Welcome to episode 47 of Mogil’s Mobcast. Today’s guest is Dr. Tracy Frech. Dr. Frech is a rheumatologist. Her primary research and clinical care goals are to increase early diagnosis and improve health care delivery to the systemic sclerosis (SSc) patient population. Today we talk about the digestive tract in which 95% of systemic scleroderma patients have issues with. We discuss all the gastrointestinal manifestations that happen with systemic scleroderma patients. This includes dry mouth, GERD, Gastroparesis, Fecal Incontinence/Diarrhea, signs for each, how to diagnose and treat each of the manifestations.
In today's episode I talk with Dr. Aly Cohen, Rheumatologist, Integrative Medical Specialist and Environmental Health Expert about the brain gut connection. One of my favorite topics. This episode was recorded last October for the National Scleroderma Foundation Minnesota Chapter Health conference. Dr. Cohen was guest, episode #7. To learn more about her please listen to episode #7. Her book Book: Non-Toxic: Guide to Living Healthy in a Chemical World (Dr Weil's Healthy Living Guides). Is a fantastic resource.
Today’s guest is another fabulous Scleroderma warrior, Tameka Nelson. As I interview more and more Scleroderma warriors, I find it intriguing how differently the same disease affects us. For Tameka, the disease attacked her lungs. Let’s learn about her journey!
Her clothing store on Instagram is: polish_me_boutiques
Her podcast is Apple Podcast at: it could be worse podcast
Dr. Virginia D. SteeN is a Professor of Medicine and Chief of the Division of Rheumatology at Medstar Georgetown University Hospital. Today, our topic is the lungs. An issue that affects many Scleroderma warriors. We discuss in detail pulmonary arterial hypertension and pulmonary fibrosis. By the time we are done talking, you will be well better informed on this topic!
Today I talk with Patricia Fennell. Patricia is the CEO of Albany Health Management Associates Inc:. She is an advanced clinical social worker. She is also a scientist and author specializing in chronic illness, trauma, forensics, and hospice care. We talk about her chronic illness, the interesting occupations she has had, and finally we discuss the Fennell Four Phase Treatment (FFPT™) approach.
To contact Albany Health Management Associates Inc: https://albanyhealthmanagement.com/
Today we hear the journey of another scleroderma warrior, Kimberly Gonzalez. Kim had her first symptom at the age of 8 and was finally diagnosed at the age of 12. Through all of her journey Kim has kept a positive attitude and is grateful for every day. Meet Kim and hear her story.
In today's episode I talk with Nancy O'Brien and Deanna Hokanson about the The Happiness Practice ™(THP). Nancy is the co-creator of the Happiness Practice and Deanna is a facilitator for the program. In this episode we learn the 5 principles of the Happiness Practice. Deanna also gives examples of how she has applied those 5 principles in her own life .
To learn more about the practice contact Deanna at dlhokanson@gmail.com
In this episode I talk with Susan Murphy, professor and Mary Alore, Peer Mentor and RENEW Health Coach. Both are part of the amazing University of Michigan Scleroderma Program. We discuss different programs being implemented at the university. Those include the mentor program, the Backers, and some of the research the university is doing. Finally, we discuss the RENEW program and their registry program. It is all so exciting information.
Today I talk with Dr. Michael Hughes, he is a consultant rheumatologist at Salford Royal Hospital, which is a national UK referral center for SSc, and Honorary Senior Clinical Lecturer at The University of Manchester. He has emerged as a leading national and international investigator in SSc and Raynaud’s phenomenon, with a focus on novel clinical assessment of vascular biology and function, including the development of new novel approaches to treatment. His doctoral PhD research fellowship (2013-2016) at The University of Manchester investigated the outcome measures of treatment efficacy, pathophysiology, and local treatments for SSc-digital ulcers. Dr.Hughes has a strong research interest in non-invasive imaging and the development of patient reported outcome measures, and works closely with patient-led organizations. He was awarded the Edith Busch Young Investigator Award in recognition of his significant contributions during the World Scleroderma Congress in 2022. Under the auspices of the World Scleroderma Foundation he leads the Digital Ulcer Working Group, and co-leads the Gastrointestinal disease Working Group. Dr. Hughes has published extensively in both clinical and basic research and has contributed to the development of SSc treatment guidelines and recommendations. He contributes to many international initiatives and collaborations including as a Fellow of the OMERACT Scleroderma Vascular Disease Working Group. He has presented and chaired (including invited oral presentations) at prestigious national and international conferences and is on the editorial board of several international rheumatology journals. Furthermore, he has published several studies in high-impact journals as lead author utilizing data from the EUSTAR cohort. Our topic today is 3 things that affect me. Raynauds, calcinosis, and digital ulcers. Lots of great information and helpful hints!
In this episode I talk with Dr. Saketkoo, she is director and founder of New Orleans Scleroderma and Sarcoidosis Patient Care and Research Center. She is a clinical researcher recognized for her work in clinical trial design, in identifying patients' priorities in life-threatening autoimmune illness including pulmonary hypertension and pulmonary fibrosis, and developing research tools with patients including targeting self-management strategies with yoga, dance and singing for lung health rehabilitation as well as mindfulness practices. She is currently co-director/co-founder of UMC Comprehensive Pulmonary Hypertension Center and Interstitial Lung Disease Clinic Programs with Louisiana State University and Tulane University Schools of Medicine. In 2018, she was honored with Doctor of the Year from the Scleroderma Foundation.
Our focus today is on the importance of exercise. Dr. Saketkoo goes into scientific detail on how exercise helps our body.
In this episode, I talk with Greg Cohen. Greg is a scleroderma warrior. He is a nationally board certified health and wellness coach and a marathon runner. Greg Cohen shares his story on how he chose to spread awareness and raise money for scleroderma. Greg’s positive energy is contagious and uplifting.
Today, I talk with Erin Raber. Erin is a board certified Music Therapist, clinical mental health counselor, and certified sound healing practitioner. She teaches us the importance of music for our health and how to use music in our everyday routines.
To read her bio, go to my webpage mogilsmobcast.com"If you are interested in scheduling an individual or group music therapy session with Erin, you can reach her at eraber.musictherapy@gmail.com."
In today's episode I talk with Dr. Lee Shapiro. Dr. Shapiro is a Professor of Medicine in the Division of Rheumatology at Albany Medical College in Albany, NY and directs the scleroderma center there. He is also founder and chief medical officer of the Steffens Scleroderma Foundation. He has been on the medical advisory board of the Scleroderma Foundation TriState for more than 30 years. Today you will learn more about the Steffens Foundation and the interpersonal education that has been implemented.
Today's episode is with another fabulous scleroderma warrior, her name is Amy Gietzen. Amy was diagnosed with scleroderma at the early age of 19. She has been a strong advocate of sharing her story with the scleroderma world. Amy started a group called Scleroderma Super Stars for patients ages 18-40, which you can now find on Inspire, Inspire is the world's largest and fastest growing online health community (https://www.inspire.com). She also started a virtual meetup group called SYNC, Young Adults Needing Connections.
Today's episode is with Celeste Freeman. Celeste is an occupational therapist, certified hand therapist, and has been working with scleroderma patients for around 15 years. She was recently awarded the Paul Brand Award through the American Society of Hand Therapists. You can learn more about this prestigious award in Celeste’s bio. In this episode, we talk about the anatomy of a scleroderma hand and the patterns of damage. We talk about strategies of taking care of our hands and lastly we talk about gadgets that can make our lives easier. The gadgets will be posted on my website. Celeste's mantra is softer not harder and smarter not harder.
Today's guest is Rachel Lando. She is a Scleroderma Warrior with a great sense of humor and has started an organization that offers free fitness for Scleroderma patients and people with chronic conditions. She knows how important movement is, regardless of the condition you’re in.
Today’s episode is with Dr. John Pauling. Dr. Pauling is a consultant rheumatologist at North Bristol NHS Trust and an Honorary Senior Lecturer at the University of Bristol Medical School. In today’s podcast, we talk about antibodies and their connection to scleroderma. We define what antibodies are, different types of antibodies found in scleroderma patients, and what those antibodies tell us about a scleroderma patient's diagnosis. We also discuss the 15% rule and Raynauds
In today's episode, I talk with Eileen Laird. Eileen is both inspiring and motivating. She shares her journey with rheumatoid arthritis, which started with her being immobilized and in excruciating pain but is now living a life almost pain free. We talk about how diet, lifestyle, and mindset helped her on her journey to better health. These tenets led her to writing her book: Healing Mindset: A Guide to Mind Body Connection For People with Autoimmune Disease. To close the conversation, we talk about the purpose of the book, how the book is set up, her favorite chapters, and helpful tips. The book is an excellent tool and I strongly recommend it!
Today’s episode is with Dr. Antonia Valenzuela, she is a rheumatologist and an assistant professor at the Pontificia Universidad Católica de Chile in Santiago, Chile, where she carries out clinical, academic, and research work with a focus on the study of scleroderma. She is currently working on validation of the Mawdsley Questionnaire, a patient reported outcome for calcinosis in patients with scleroderma. We discuss what might be causing calcinosis, how we can manage it and the research being done on it.
If you would like to participate in the Mawdsley Questionnaire, you can email Dr. Antonia Valenzuela atantonia.valenzuela@uc.cl
Today's episode is with Helene Golston, she is a scleroderma warrior. She shares with me what she has endured over the past 26 years. Helene has the cup full attitude as you will be able to hear throughout our conversation.
In today’s episode, I talk with Amy DeMaria. She is the Senior Vice President of Marketing of Inspire. Inspire is the world’s largest social network for health. Inspire brings together people across hundreds of disease communities to connect, share information, and provide support. It is an online community for individuals struggling with their disease. It is a safe, secure, and anonymous website for people to connect to one another. Inspire has over 2 1/2 million members. The scleroderma community has over 77,000 members. Inspire's tagline is : Together we are Better.
In this episode I talk with Physical Therapist Sandy Vojik. One of her philosophies is if you give the body the right stimulation it can improve or heal. She also uses Joseph Pilates philosophy that if you don't breath well you don't move well. With those 2 ideas she provides breathing techniques, fascia work, and posture exercises.
In this episode I talk with Sharon Dobie. She is on the board of the Scleroderma Research Foundation, a Family Medicine physician, and Professor Emeritus at the University of Washington School of Medicine. Sharon’s son died of complications from Scleroderma in 2017. Today we talk about the Scleroderma Research Foundation's mission, some of the projects the foundation is working on, Sharon’s story of loss, and a little about Bob Saget.
Today's episode is a solo episode. I talk about Scleroderma Awareness Month and World Scleroderma Day. Then, I share 2 stories that a lot of people can relate to: health insurance and difficulties with a doctor. I hope you enjoy it!
In today's episode, I talk with Ashley Barron. She is the new Celebrity Ambassador for The National Scleroderma Foundation and a newly recording country artist. Ashley also has Scleroderma and has lost her mom to the disease. Ashley has an upbeat personality and is a joy to talk to.
In this episode I finish my conversation with Jessica Farrell. We finish by discussing medications that are used for Raynaud's, the GI tract, Interstitial lung disease, renal disease, and pulmonary hypertension. We will end the discussion with information on how to access medications at affordable prices. You will be well versed on scleroderma medications by the end of this podcast!
In this episode I talk with Jessica Farrell. She is a clinical pharmacist and a professor at the Albany College of Pharmacy and Health Sciences. We discuss the many medications that a scleroderma warrior could take. Jessica has so much information that I decided to divide the podcast into 2 parts. Today in part 1, we first discuss her background and the fabulous contribution she has made to help people gain access to affordable medications. Then we talk about immunosuppressants.
In this episode I talk with Dr. Brett Thombs, he founded and directs the Scleroderma Patient Intervention program (SPIN) with the help of and in collaboration with over 150 investigators, health care providers, patients, and patient advocates from 8 countries and 50 scleroderma expert centers. The program's philosophy is to help Scleroderma patients live better with the hand that they've been dealt. This is done through research, data, tests, cohorts and programs.
In this episode, I talk with Dr. Richard Silver. He is the co-director of the Scleroderma Center at the Medical University of South Carolina in Charleston, SC and has been working in rheumatology with Scleroderma patients for 4 decades. Today he shares his wealth of knowledge about tests that are available for scleroderma patients and the importance of having them done.
In this episode I talk with Kerry Jeffrey, a clinical therapist. We talk about the grief that can happen when diagnosed with a chronic illness. There are 9 possible stages of grief. Kerry explains what stages people might get stuck at and tips on how to move out of that stage.
In this episode, I chat with Dr. David Leader. He is a Doctor of Medicine in Dentistry and has a dental public health masters. Dr. Leader is a nationally recognized expert on Scleroderma and oral health. We talk about how the mouth and skin changes with Scleroderma, the effects of medication, periodontal disease, dry mouth, and adaptive equipment.
In this episode, I talk with Christina Loccke whose daughter has juvenile Scleroderma. Christina takes us on her daughter's journey from diagnosis, medical treatment, and lifestyle. We talk in detail about what juvenile Scleroderma is, since it is very rare. Christina is paying it forward by helping other parents whose children are afflicted with this disease. She is also on the board of directors for the National Scleroderma Foundation.
In this episode, I talk with Dr. Elizabeth Volkmann. She is an adult Rheumatologist and is the Director of Scleroderma at the University of California-Los Angeles, Scleroderma Program. Her research focuses on the GI tract and looking at the gut microbiome. We start from the beginning of the digestive tract, and work our way down!We talk about causation, medications, nutrition, and ways to handle the frustrations that come with our digestive tracts not working correctly. There is a lot of information.
In this episode I talk with Mary Wheatley, the CEO of the Scleroderma Foundation. We talk about the Foundation, its history, philosophy, services being offered, events and how to get involved.
In this episode, I go on another journey with Scleroderma patient Karen Vasquez. Karen and I talk about her battles with Scleroderma and how she was able to find humor in the disease. This led to her passion of becoming a comedian.
In this episode I talk with Jan Nitti, a board member of the Raynaud’s Association who is also afflicted with Scleroderma. We discuss what Raynaud’s is and some myths about it. We also talk about how to deal with this disease, including medicines, lifestyles, and fun products that can be used. I
In this episode, I talk with Renee Andreasen. She is a functional nutrition counselor, a certified AIP coach, and within the next year, she will be a board certified health coach. Her specialty is gut health. We spent a lot of time talking about AIP also known as Autoimmune Protocol or Autoimmune Paleo. We discussed ways to be nutritionally healthier to our bodies. Renee shares so much information, you might need to take notes!
In this episode I talk with Stephanie Shutes. She is a Scleroderma warrior. She was diagnosed at an early age of 21, although diagnosed incorrectly, it changed the trajectory of her career path of becoming a professional basketball player. She has maintained an upbeat attitude and her positive attitude is contagious, as you will find out.
In this episode I talk with Andrew Botieri, a Scleroderma survivor. He is in the small percentile of men who are diagnosed with Scleroderma. Andrew talks about his near death experience and about how keeping a positive attitude is key to staying ahead of a chronic illness. Andrew has written a book called "A Celebration of Life: A Story of Hope, A Miracle and the Power of Attitude", in which he goes into detail about his near death experience and recovery. To find the book you can to my website mogilsmobcast.com or his andrewbotieri.com
In this episode I talk with Dr. Alison Danby, a Naturopathic Doctor, Certified Functional Medicine Practitioner, and Certified Neuro-Linguistic Practitioner. We discuss her autoimmune disease Hashimoto, what it means to be a functional practitioner. What she offers at her clinic to help people with autoimmune disease and lastly, some possible causation of autoimmune diseases.
In this episode I talk with Dr. Aly Cohen, Rheumatologist, integrative medical specialist and environmental health expert. She has so much information to share from all of her areas of expertise. We discuss everything from her integrative approach to working with autoimmune patients, to her wellness approach with her patients and the use of chemical products. There is a ton of important information in this podcast and I hope you learn as much as I did!
In this episode I talk with Lori Pierce, a long time Scleroderma patient. She tells her story of battling with Scleroderma and the many hurdles she has overcome. One of the hurdles she mastered was yoga. She discusses how she championed it by becoming a Scleroderma yoga instructor and shares her knowledge through her and her partner's website: Yoga for Scleroderma. A free website we all can enjoy!
In this episode I have a beautiful conversation with a scleroderma warrior, Claudia Sultan. Her journey reveals how much of a warrior she is. She is the small percent who qualify for stem cell transplant and describes how it saved her life. She has chronicled her journey in her book, A Life with Uncertainty. A link to her book can be found on my website, Mogilsmobcast.
As a part of living with a chronic illness one change many of us take is lifestyle. One lifestyle I changed was how I eat. I talked with Angelina Chilcoat, an occupational and certified hand therapist, about how to navigate in the kitchen when you have a chronic illness. Many Scleroderma patients suffer from Sclerodactyly, which causes the fingers to curl inwards and become difficult to use and also deal with joint pain and tiredness. Angelina and I talk about energy conservation and how it applies in the kitchen.
If you'd like to ask a question or get more information, you can find Angelina Chilcoat on Facebook.
Dr. Beldner has extensive knowledge of Scleroderma which he discusses in the podcast. We talk about Raynaud's in detail and hand surgery. He is available for consultation in person or via telemedicine. To contact call:212-434-4263
In this episode I have a heartfelt conversation with my grown children about what it is like growing up with a mom with a chronic illness.
In this episode I will be telling my roller coaster journey ride with Scleroderma of over 20 years.