PF News & Perspectives: Recent Episodes
Pulmonary Fibrosis News
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote on the importance of mental health, especially as the world begins to emerge from the COVID-19 pandemic. Charlene recently reflected on where she was one year ago at this time; when she had just begun to seriously consider a mental health leave from her career. While things are better for her now, she’s seeing the impact of the pandemic on people’s mental health every day and she wants to remind everyone that it’s important to prioritize your mental health now more than ever. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Being on supplemental oxygen doesn't mean you have to avoid the hot summer months entirely. Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall shares some useful tips about this subject. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: http://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing the review request for Tyvaso DPI to be used in patients with pulmonary arterial hypertension (PH) and PH associated with interstitial lung diseases (ILDs), including those with IPF. Tyvaso is currently approved by the Food and Drug Administration in the US, however, the examination of how an inhaled form of Tyvaso (Tyvaso DPI) might better assist patients with PH and PH-ILDs is currently under way by United Therapeutics. If you have ILD-induced pulmonary hypertension, have you ever spoken to your doctor about Tyvaso? Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote trying to better understand the relationship between asthma and IPF. Prior to being told she also had asthma, Charlene thought it was uncommon for the two to be diagnosed together. Surprisingly, even if an IPF patient doesn’t have asthma, many use inhaled therapies such as Ventolin, to alleviate their lung disease symptoms. As a patient living with IPF/PF: have you ever discussed asthma or asthmatic symptoms with your doctor? If so, what was done to alleviate them? Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing a study looking at self-reactive antibodies and the effectiveness of Esbriet. Many times, patients with IPF have an underlying autoimmune disease which may alter the effectiveness of one of the anti-fibrotic medications used to manage IPF. This study conducted in South Korea over five years suggests that if an IPF patient doesn’t respond to Esbriet, they should be re-evaluated for an underlying autoimmune disease. As a patient living with IPF/PF: have you been diagnosed with an underlying autoimmune disease? Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote following a week of trying to manage new medications that weren’t helpful. Charlene felt frustrated and discouraged when her prescribed therapies weren’t relieving a sudden increase in shortness of breath and writes about where to turn when new medications aren’t effective. Topping that list is connecting with other patients, which Charlene finds powerful and comforting; there is no greater source of information than from fellow rare disease patients. As a patient living with IPF/PF: where do you turn when a newly prescribed medication isn’t helpful? Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing the events planned for 2021 Rare Disease Week on Capitol Hill. Amid roundtable discussions, policy updates and documentary screenings, patients and advocates will have an opportunity to win grants through the EveryLife Foundation for a rare disease organization of their choosing. Check out all the action for this year’s Rare Disease Week on Capitol Hill on the EveryLife Foundations’ homepage. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote on the importance of emergency preparedness plans and communication. Living with a life-threatening illness like IPF means emergencies can arise unexpectedly, but they can be a little less daunting if you do some work ahead of time in anticipation of them. Read more on how you can prepare for an emergency and why communication is key! Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article on the effectiveness of AP01 (inhaled pirfenidone) following an Australian study on IPF patients. Both the safety profile and side effects are promising, along with the hope from the pharmaceutical company that more of the drug will get into the lungs via an aerosol consumption method. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote on the power of sharing your IPF story and how stories, in general, can be a foundation for change. Charlene is desperate to debunk the myth that young adults aren’t diagnosed with IPF, and she’s calling on fellow patients who fall in that age group to be vulnerable and share your story. It is our lived experience (and stories) that can be a catalyst for conversation and spark change for those living with this cruel lung disease. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads the first piece from new columnist Ann Reynoso, where she shares her experience of being diagnosed with lymphocytic interstitial pneumonia (LIP). As Ann describes, there are a vast number of lung diseases and sometimes, getting an accurate diagnosis is difficult. Listen Ann’s experience of noticing symptoms and how she managed to get her diagnosis of LIP and is now learning to live with it. Welcome to the PF columnist team, Ann! Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing a collaboration between Vicore Pharma and Alex Therapeutics, focusing on the mental health of patients living with IPF. The newly designed app will allow patients to access artificial intelligence that can support their mental health needs, such as anxiety and depression, through the use of cognitive behavioural therapy (CBT). Having access to this resource at a patient’s fingertips could be transformative in helping them cope with their disease. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a piece by co-columnist Christie Patient, as she reflects on the importance of sharing stories as survivors of IPF and lung transplantation. Christie continues to share her Mom’s lung transplant experience despite the raw emotions associated with her being so sick and encourages others to do the same because it helps those currently in the fight with this terrible disease. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote on some of the luxuries that IPF has stolen from her since being diagnosed five years ago. Charlene regularly tries to embrace the positives, but sometimes, being open and honest about the frustrations of this disease is therapeutic for her and getting them down on paper helps too. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column summarizing the findings from two leading healthcare centers, John Hopkins University and Mayo Clinic, on the effectiveness of the mRNA vaccinations for transplant recipients. After one dose of the Pfizer or Moderna vaccines, researchers found the effectiveness to be significantly less in transplant recipients who are immunosuppressed compared to those who aren’t. However, more hope was provided after they studied the second dose as transplant patients were increasingly protected, albeit still less than those of their healthy counterparts. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote on exposing unexpected sources of mold in the home and how to eliminate them. Charlene was surprised to find where mold might exist in her home and is now actively taking the steps to remove such a risk to her lungs; something that is detrimental to the overall health of a patient with a pulmonary disease. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article examining the efficacy of Ofev among elderly patients living with IPF, who also had comorbidities. The 2021 study ultimately determined the benefits of Ofev were similar in elderly IPF patients and among those who had few or several comorbidities. However, patients who were older were more likely to discontinue use of Ofev due to adverse side effects such as diarrhea. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column summarizing a study examining the effectiveness of chemotherapy on patients with IPF. Both patients in the study had IPF and were put on a chemotherapy regimen to treat small-cell lung cancer (SCLC). The study determined that the chemotherapy these patients needed were effective against the SCLC without causing progression in their IPF. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote on the phenomenon known to the rare disease community as ‘scanxiety’. While Charlene still experiences this herself prior to test results, scans or bloodwork as a patient with IPF; she has some tips on managing generalized anxiety that can help rare disease patients who are struggling with scanxiety.
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a piece from co-columnist Emma Schmitz on weighing out the risks of her Mom visiting her grandkids as a lung transplant patient, now vaccinated, vs. the reward. Emma is looking forward to her parents visit now that they are both vaccinated and some parts of the world start to gain traction against COVID-19. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a summary of a case report on the use of Ofev in the treatment for non-small cell lung cancer. Unexpectedly, the use of Ofev on a patient with this type of cancer and IPF, showed an antitumor effect and a stabilization of lung function, the report showed. Other reports have yielded similar results, indicating that Ofev may be an effective therapy in helping treat both IPF and non-small cell lung cancer. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an column she wrote summarizing what constitutes a bad clinic day for her. Delayed appointments, excessive needles or scans to monitor disease progression, and poor test results are just a few things that make clinic days difficult for Charlene. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing a study with real-world data on the safety and effectiveness of Ofev and Esbriet for IPF patients. The study ultimately revealed that these antifibrotics are having a promising effect on progression-free survival, lung function and mortality among IPF patients. It also revealed that Ofev seems to be better tolerated in the early stages of therapy with the antifibrotics medications. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote on COVID-19 and how precautions to protect ourselves from the virus, illuminates some of the habits rare disease patients face. In particular, Charlene discusses how people have now adapted to wearing a mask, obsessively washing their hands and cancelling social plans if they are ill; all of which are precautions patients with IPF have been taking for years. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing a study of real-world data from a registry of IPF patients in the UK. Ultimately, the study determined that changes in diagnosing and managing patients with IPF in the UK were occurring for the better, based on a review of the registry patients between 2013-2019. Vital improvements in patient care were particularly noted, and researchers indicated it is important to consider these improvements for the development of healthcare policies, impacting longer term outcomes. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing a study examining fine particulate air pollutants and acute exacerbations or flare-ups of IPF. The study looked to understand the risk factor associated with such pollutants and found that exposure to nitric oxide and PM2.5, a type of fine particular air pollutant does increase the risk of an acute exacerbation among IPF patients. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote about her experience being vaccinated and wrongly thinking she could start giving hugs again. In particular, Charlene is longing to hug her nephews but now knows it’ll be a little longer until everyone is vaccinated and it’s safe to do that. She writes about how she’s angry at the pandemic from stealing her already-limited time with loved ones due to her diagnosis of idiopathic pulmonary fibrosis (IPF). This is true even for patients who are post lung transplantation. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote about her experience, or lack thereof, with clinical trials as a young adult. She’s always excluded from participating simply due to her age, despite the importance of better understanding this disease in young people. Charlene wishes she could share what her experience with clinical trials have been when others ask, but unfortunately, she doesn’t have any to share. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing recommendations from a data safety and monitoring board regarding the dose of treatment in the Galactic-1 trial GB0139. Once these recommendations are implemented, the study will continue to find an inhaled therapy effective in the fight against IPF, especially for those who are not taking Ofev or Esbriet. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article from co-columnist Christie Patient about getting her COVID-19 vaccine early as a caregiver. Christie shares her guilt for being eligible to receive the vaccine ahead of others at higher risk, but then recounts the importance of everyone getting vaccinated to build herd immunity faster. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing a meta-analysis of patient-control studies to examine the increased risk of IPF from occupational and environmental exposures. It was found that exposure to pesticides, metal dust and wood dust increases the risk of IPF along with an occupational history of farming or agriculture or among those who ever smoked. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote summarizing the virtual Rare Disease Day event BioNews recently offered. On top of a successful event, patients highlighted the importance of offering an event like this where rare disease patients are given the opportunity to come together, regardless of which disease they had. Charlene reflects on all the commonalities that exist among rare disease patients following that event. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article highlighting a new device being used at Duke University Hospital to help improve the successful transportation of donor lungs to recipients awaiting lung transplantation. LUNGguard is a device of Paragnox Technologies and is being used to cold store lungs to extend time between harvest from a donor to transplantation, subsequently resulting in more lungs being available to patients. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article from co-columnist Emma Schmitz on how she misses giving her Mom hugs amid the current COVID-19 pandemic. Not only is this discouraged from a public health guideline, Emma strives to be extra cautious as her Mom recovers from a lung transplant and is considered immune-suppressed. Read how something as simple as a hug is missed amid our current global health crisis. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing the results of a Eurodis Survey highlighting the healthcare experience for patients with a rare disease. Respondents to the survey identified three priority healthcare areas where changes could be made to help better care for patients with rare or complex diseases. Eurodis hopes the results of this survey will inspire policymakers to improve care to patients with a rare disease in Europe. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote on helping others manage stress amid the COVID-19 pandemic. Everyone deals with stress differently, but collectively, this pandemic has forced us to utilize many different coping skills to manage the stress of our current health crisis. Read some tips on how to help others effectively manage pandemic-related stress. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing the development of a lung-on-a-chip which will provide a more precise model for studying lung disorders, such as PF. Researchers at the University of Bern in Switzerland hope the application of this technology will advance both basic research into lung diseases and improve personalized medicine. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a piece from fellow columnist Christie Patient on the hope she feels after her parents both received their first COVID-19 vaccination. Christie’s Mom, Holly, is a lung transplant recipient and thus, Christie and her family have understandably been fearful of the virus throughout the last year. While we have a way to go before things are considered “normal” again, Christie feels hopeful as a result of the vaccine. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article announcing a priority review by the FDA on using Esbriet as a treatment for Unclassifiable Interstitial Lung Diseases (UILDs). Currently, there are no treatment options to slow the fibrotic progression for patients living with a UILD so the priority review, pending it’s results, could bring hope for people who otherwise have no option to treat their UILD. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote on the importance of goal-setting as a contributor to better overall health. Charlene has found this particularly important as she continues to recover and starts a new job. She also shares some of the tips that help her achieve those goals. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article highlighting an upcoming event by the European IPF and Related Disorders Federation (EU-IPFF). This virtual summit was created for patients, by patients and will focus on the patient voice and experience. To learn more about this virtual event, visit: eu-ipff.org
Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote in memory of Don Prager, known to the PF community at Donnie Vapor. Charlene shares memories of Donnie in this piece, along with what she and other members of the PF community will miss most about him. Charlene is still contemplating how else to honor this great man but invites others to share their memories of him after reading this piece. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing a recent webinar where key staff from NORD, the FDA and the CDC addressed concerns regarding the COVID-19 vaccines from the rare disease community. Among many other messages, an important takeaway from this webinar is that the current COVID-19 vaccines are safe for the rare disease community, including those living with pulmonary fibrosis. The full webinar discussion can be found on NORD’s homepage. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article from co-columnist Emma Schmitz who chronicled her Mom’s lung transplant experience amid COVID-19. Emma’s Mom received a single lung transplant in May of last year, and despite having to stay out of the hospital due to the pandemic, Emma shares what the experience was like for her. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing a study out of Kindai University in Japan, where researchers investigated outcomes of IPF patients who experienced a pneumothorax (collapsed lung). They concluded that unfortunately, a pneumothorax among IPF patients can be difficult to treat and is associated with poorer outcomes, and noted that recurrence is common, especially among patients requiring a chest tube drainage for their first pneumothorax. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she recently wrote on her experience with post-traumatic stress disorder (PTSD). Charlene decided it was important to be vulnerable and discuss this topic, as she believes PTSD might be more common among chronically ill patients than we think, including those living with IPF. Charlene shares both her struggle with the disorder and what helps her combat it. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a summary of a study investigating fatigue in IPF patients (as measured by a Fatigue Assessment Scale, FAS) in those taking both Esbriet and Ofev. Unsurprisingly, the study revealed that fatigue is IPF patients suffer substantially from fatigue, regardless of the type of anti-fibrotic therapy they are taking. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote to help the chronic illness community address any pandemic-related anxiety through various resources. Many patients living with IPF are not immune to feeling anxious, and the current global health crisis has unfortunately increased those feelings. If you’re struggling and needing help, please check out the resources listed in this briefing. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing a National Institute of Health (NIH) grant awarded to Boston University School of Medicine to create a cell model of IPF. This will help investigators better understand the processes that initiate and drive the progression of this cruel lung disease. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing a European study examining the health-related quality of life (HRQoL) of patients living with idiopathic pulmonary fibrosis. Unsurprisingly, disease severity and age consistently emerged as two causes of decreased HRQoL among patients. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing an initiative between IPF patient, Nick Brown and the Three Lakes Foundation (TLF). This partnership is to help raise awareness for IPF while detailing the efforts of TLF along with sharing Nick’s story of being diagnosed with IPF as a young adult and subsequently receiving his double lung transplant. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a piece from our new columnist, Emma Schmitz on the experience of caregiving for her Mom post single lung transplant, amid a pandemic. Welcome Emma to the PF columnists’ team, we look forward to hearing more about yours and your Mom’s experience with IPF, transplant and caregiving. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Beginning Wednesday, December 23, those of us at Pulmonary Fibrosis News will be taking a break for the holiday season. The flash briefings that you normally listen to every Monday and Thursday, will resume on Monday, January 4th, 2021. We hope that you, your family and loved ones have a wonderful holiday season, and we look forward to bringing you the latest news and perspectives regarding PF in 2021.
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reflects on another birthday and the opportunity for reflection on the year just passed and the one to come. Birthdays tend to hold a lot of meaning for patients with a life-threatening lung disease like IPF. Therefore, Charlene spends time each year reflecting on what the previous year has taught her. Hear those reflections in her latest briefing! Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing a UK-based, aimed at understanding the impact of COVID-19 on the PF community. Results showed an unrelenting impact of the virus on this particular rare disease community. From delayed diagnosis, to cancelled medical appointments and pulmonary rehabilitation classes, the COVID-19 pandemic is deeply affecting those living with PF. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote about finding the power in sharing your pulmonary fibrosis story. Inspired by the members of a recent peer support group through the Pulmonary Wellness Foundation, Charlene is considering a few new initiatives to encourage others to help one another through the sharing of their own story. There is no greater good than helping others, and as patients living with the same disease; we’re in a unique position to do that for one another. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing a European survey investigating the impact of COVID-19 on rare disease patients in Europe. More specifically, the survey conducted by Eurodis was looking at how the pandemic disrupted care for this particular cohort of patients and plans to use the results to provide recommendations for better healthcare amid the continued pandemic and beyond. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column written by co-columnist Christie Patient on how she navigated time in the ICU with her Mom, while combating obsessive compulsive disorder (OCD) which complicates her thoughts. Christie shares some strategies that helped her during this difficult time and talks openly about caregiving with a mental illness. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing a new trial taking place in partnership between Boehringer Ingelheim and Mount Sinai Hospital. The study will investigate the effect of Ofev on patients who develop lung fibrosis as a result of a COVID-19 infection. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote discussing palliative care and the historical stigma attached to this specialized type of medicine. Unfortunately, palliative care remains associated with end-of-life, which often deters patients from seeking out these professionals as part of their care team. However, palliative care focuses on improving quality of life and Charlene shares several ways they’ve helped her since her IPF diagnosis. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing two studies examining new targeted therapies to help patients living with pulmonary fibrosis. Both therapies are expected to move into clinical trials in the next several months and are being led by a researcher in Indiana. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column about the importance of embracing caregiving, in honor of National Caregiver Awareness Month. PF News Columnist Christie Patient writes about the beauty in caregiving for her Mom following a double-lung transplant, and how this is a necessity to recover from such a difficult operation. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column summarizing the work of researchers from University at Buffalo (UB) who recently received a large grant from the National Heart, Lung and Blood Institute to develop a model that mimics human lung tissue. The chair of the biomedical engineering department at UB calls this research exciting and is quoted saying it could “improve drug development and ultimately lower costs” for options to treat patients living with PF. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote on talking to kids about chronic illness. Understandably, most parents and caregivers want to protect children from difficult news such as the diagnosis of a life-threatening illness, like IPF. However, it’s important to understand that telling them is necessary to preserve the trust in a parent-child relationship. It’s more important to discuss how and when to tell them versus whether or not to tell them. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a summary of a UK study investigating the use of Ofev and Esbriet on IPF patients with ‘mild’ disease. The investigators of this study advocate that patients with an FVC (forced vital capacity, lung function measurement) above 80% could benefit from treatment with anti-fibrotic therapy. The study was conducted because consensus on when anti-fibrotic therapy should be initiated is often varied across physicians. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote after experiencing the first unseasonably cold day in Canada. Despite living with IPF for four years, Charlene forgets after each summer season, when fall or winter arrives, that the cold air wreaks havoc on her lungs and causes discomfort, shortness of breath and general discomfort. She reads more about it in this flash briefing! Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a summarized report of findings, following a survey conducted by the National Organization for Rare Disorders (NORD) on the effectiveness of telehealth amid the COVID-19 pandemic. Majority of patients found telehealth a helpful alternative to in-person care during the pandemic, and hope it will remain an option even when the coronavirus public health emergency ends. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article from fellow columnist Christie Patient regarding her experience with therapy following her Mom’s IPF diagnosis and double-lung transplant. Christie provides some tips for those who might be weary about seeking help or therapy following the diagnosis of a life-threatening illness or as a caregiver. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing a 2020 study investigating health-related quality of life (HRQoL) in patients with idiopathic pulmonary fibrosis (IPF). The study conducted in the European Respiratory Journal Open Research revealed that both respiratory and emotional symptoms may decrease quality of life in patients living with IPF. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote regarding the dangers of toxic positivity. For many patients living with a chronic illness, phrases intertwined with toxic positivity (despite how well-intentioned they are) can be hurtful, such as “things will get better”, or “just stay positive”. The reality is that IPF is a progressive, life-threatening illness so these statements are not only untrue, they also invalidate a patient’s struggle with their disease. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing a study examining large chest lymph nodes in those with IPF and whether this is tied to higher mortality or disease progression among patients. The study was recently published in BMC Pulmonary Medicine after investigating trends in 152 patients living with IPF, identifying that up to 58% of those patients showed signs of enlarged lymph nodes. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article she wrote following the launch of a new peer-to-peer support group for patients living with pulmonary fibrosis. The program has launched through the Pulmonary Wellness Foundation and follows a true model of peer support, whereby patients come together and learn about their disease and how to better live with PF. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing a study that evaluated lung function decline after taking anti-fibrotic therapy for IPF patients. Lung function decline, as measured by forced vital capacity (FVC), can help predict survival in patients with IPF, particularly among those prescribed the anti-fibrotic therapies for IPF. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote after reflecting on who she was before IPF and since her diagnosis of this cruel lung disease. Charlene worried that comparing what-feels-like two separate worlds (before and after IPF) would make her depressed and sad, however the exercise was invigorating and therapeutic. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing a new Canadian partnership aimed at helping patients with progressive fibrosing interstitial lung diseases (ILDs). Boehringer Ingelheim Canada is leading this partnership in collaboration with the University Hospital Foundation (UFH) for those living with ILDs in Alberta and throughout Canada. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote regarding exercise as a patient living with IPF. There’s no debate that physical activity is important for patients with any type of lung disease. In this column, Charlene shares some tips that have made exercise both easier for her as an IPF patient, and more enjoyable. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing a new U.K. initiative to help general practitioner’s (GPs) improve PF diagnosis, care and awareness. This initiative and the necessity of it was backed by a 2018 survey, which outlined staggering statistics on misdiagnosis and the length of time it took patients to receive the proper IPF/PF diagnosis. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article highlighting the efforts to raise awareness for pulmonary fibrosis during PF Awareness month this September. Join the Pulmonary Fibrosis Foundation (PFF) and many other agencies around the world in their efforts to illuminate this progressive lung disease! Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing the relationship between bilirubin levels and the predicted progression of idiopathic pulmonary fibrosis (IPF). The link between bilirubin levels and other chronic respiratory conditions, however, the link to IPF remains unclear. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column by Christie Patient who is a caregiver for her Mom Holly, post double lung transplant. Christie addresses the issue of chronic prednisone use after transplant and how it can affect a patient’s self-image. She also provides recommendations from her Mom on how to manage the side effects! Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing a recent study examining the safety and efficacy of Ofev in patients with poor lung function. While the researchers recommended additional studies to understand more, the results demonstrated that Ofev is effective and safe in patients with poor lung function, defined as equal to or less than 50% forced vital capacity (FVC). Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote about pulmonary fibrosis month, which is every September and how she feels awareness for PF is not as important as other causes Charlene wants others to recognize the symptoms of PF and other interstitial lung diseases (ILDs) because they’re often misdiagnosed and when you can’t breathe, nothing else matters. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing the reduction in IPF-related mortality rates between 2004 and 2017, as cited by a US study. The researchers not only looked at overall IPF mortality rates in the last decade, but also how specific subsets of populations, such as those within certain age and ethnic groups were affected. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote about IPF-related pressures, following a recent conversation she had with her Rheumatologist. Following a medical leave of absence, Charlene was encouraged to create a list of other areas in her life where she feels stress or pressure. Unfortunately, many of these pressures are unique to living with IPF. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing a study on patient perceptions of Ofev and Esbriet. More specifically, a Medical Center in the Netherlands evaluated the expectations and experiences of people with IPF who are taking either Ofev or Esbriet. The study revealed there was a similar satisfaction among IPF patients taking either of these medications. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote about mitigating risk as a patient living with a chronic lung disease. Charlene frequently weighs out all her options when trying to make a decision, and she’s currently toying with something that presents some level of risk. However, she’s beginning to think that mitigating risk entirely as a patient living with IPF is just not possible. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article announcing a Phase 3 trial examining the effectiveness and safety of Ofev for children with fibrosing interstitial lung diseases (ILDs). Currently, Ofev has been approved for multi-purpose usage in adults with fibrosing ILDs, but this study will look at its effectiveness in children. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote recently following a string of summer thunderstorms that left many PF patients along the US Eastern Seaboard without power. She discusses some tips to proactively help PF patients proactively prepare for power outages, especially those requiring supplemental 02. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing a poster presented at the virtual American Thoracic Society (ATS) conference earlier this month. The poster captures data from a recent trial showing the effectiveness and benefit(s) of using Ofev to preserve lung function and help manage various forms of progressive interstitial lung diseases (ILDs). Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall shares tips on how she’d made extended time in quarantine a little easier amid the COVID-19 pandemic. In particular, she finds gentle exercises at home and maintaining a regular sleep schedule helpful to her physical, mental and emotional health during this difficult time. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing a study that examined the cancer incidence and risk factor of those living with IPF. Unfortunately, the study reveals that IPF might be an independent risk for cancer development and recommends healthcare professionals be aware of this when treating patients with IPF. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a recent column from Christie Patient, co-columnist for PF News and caregiver to her Mom, Holly, who had a successful double lung transplant. Christie recounts some of the hardest days as her Mom’s caregiver, and highlights that caregiving remains ever-so important in the recovery phase post-lung transplant. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing a case study on a 56-year old lung transplant recipient undergoing pulmonary rehabilitation. The case study reveals that a tailored exercise program can help patients with IPF during the presurgical period, as they await lung transplantation and that pulmonary rehabilitation benefits the patient post-surgically as well. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column by friend and fellow writer, Christie Patient on how she views her Mom’s successful double lung transplant. While literature and physicians state there is no cure for pulmonary fibrosis, and that a lung transplant is only a type of treatment for the disease; Christie believes different. She sees the drastic change in her Mom from lung transplantation, and believe it helped cure her Mom from IPF. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a news article summarizing an Australian study which examined both occupational and environmental hazards as they relate to IPF development. The study concludes that ~20% of IPF cases could be prevented through tighter control of workplace smoking, dust suppression and elimination of asbestos, in addition to regular personal protective equipment (PPE) use. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she recently wrote about the controversy surrounding the use of masks to slow the COVID-19 pandemic. She also shares a list of credible resources to help other patients share with those contributing to or creating this controversy. We must do our part to slow the spread of this virus by protecting ourselves and others through the use of masks. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene
Marshall reads about a new venture called the OSIC Pulmonary Fibrosis Progression Challenge. Kaggle, a data science community platform is inviting scientists, researchers and clinicians to compete in creating an algorithm for predicting lung function decline in patients with IPF. This would ultimately help improve treatment and accelerate the clinical development of novel therapies for IPF. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote recently about the COVID-19 restrictions starting to ease, and how that makes her feel. Despite her best efforts, Charlene fell ill with COVID-19 and is deeply fearful of catching the virus again. She can control her exposure to the best of her ability, but as restrictions ease and medical appointments ramp up again, Charlene worries about coming into contact with someone who is unknowingly exposed to the virus. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article examining the rate of hospitalizations and in-hospital mortality among patients with various interstitial lung diseases (ILD), including IPF. Encouragingly, the all-cause mortality rate(s) for people living with IPF decreased in the 11-year period of the study. For patients living with an ILD, this study reported that seasonal changes in weather are important factors in a patient’s well-being. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column detailing the difficulties she has faced recovering from several acute illnesses as of late. Charlene hopes this column helps others understand that recovering from being sick, especially if it is a prolonged illness, is a lot of work and oftentimes, it’s more than just the physical recovery that is challenging. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article recently published on PF News, which summarizes a study examining mortality risk of IPF patients treated with anti-fibrotic therapies vs those who aren’t. This large registry-based study revealed that patients taking either Ofev or Esbriet had a mortality risk that was 37% lower than patients not treated with such therapies. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://www.pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a beautiful column by Christie Patient, on how her relationship with her Mom was strengthened as she cared for her pre and post-lung transplant. Christie talks about the reversal of roles when it comes to a child caregiving for a parent, rather than the normalized role of a parent caring for their child. Christie learnt a lot as a caregiver for her Mom’s transplant, and her words capture this experience beautifully in her column. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article recently published by the British Lung Foundation regarding air quality during the COVID-19 lockdown. It’s easy to understand that poor air quality has an impact on our lungs and overall ability to breathe. This study revealed that 16% of people in the UK who had various lung diseases, including IPF, noticed an improved air quality during the COVID-19 widespread stay-at-home orders. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote about identites, and how “patient with IPF” is just one of many identities she has. Charlene talks about the importance of not making your disease identity a prominent one, however, she also talks about how it is important to tell others about her disease in order to be set up for success or accommodated when she needs it. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing a study which examined the prognosis in patients with combined pulmonary fibrosis and emphysema (CPFE) after an acute exacerbation. This study revealed that patients with idiopathic pulmonary fibrosis (IPF) who had an acute exacerbation were significantly worse than those with CPFE. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she recently wrote about measuring productivity differently as a patient with IPF. She now focuses on measuring productivity by the quality of accomplishments she achieves versus the quantity. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing a study recently published by the UK. This study sought to understand the pattern of signs and symptoms leading up to a diagnosis of idiopathic pulmonary fibrosis (IPF). The results indicated a lag between when the symptoms were first recognized in patients and when they are ultimately diagnosed with IPF. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column from her colleague Christie Patient, who is a caregiver for her Mom who received a double lung transplant. Christie writes about what she learnt as an unexpected caregiver through her Mom’s experience with IPF and lung transplant in a creative, honest and inspiring way. She offers a unique perspective and gives a voice to new caregivers through this open letter. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing results from a study on the effectiveness and safety of using Esbriet as a treatment for idiopathic pulmonary fibrosis (IPF). The study, conducted in Poland, allowed researchers to analyze data from 307 patients with IPF, revealing pirfenidone’s long-term acceptable safety and efficacy profiles. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote on her personal experience with COVID-19. Like many others living with a chronic lung condition, Charlene Marshall was deeply fearful of COVID-19 but now feels obligated to share her experience with the IPF/PF community through this column. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article examining the link between patients with interstitial lung disease (ILDs) and ischaemic heart disease or myocardial infarction (heart attack). Many patients living with idiopathic pulmonary fibrosis (IPF), the most common type of ILD, find themselves navigating heart problems as well, which is reflective in the study, “Interstitial lung disease is a risk factor for ischaemic heart disease and myocardial infarction” (2019). Further understanding these risk factors and the relationship between ILDs and heart disease allows clinicians to better assess and manage the cardiovascular needs of patients. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a recent column she wrote about calming our anxieties amidst the COVID-19 pandemic. Patients living with idiopathic pulmonary fibrosis (IPF) are considered high-risk for catching the virus, and experiencing critical complications as a result. This can be frightening so Charlene Marshall encourages all patients with IPF to focus on their mental health during this scary time. See some of the tips she has suggested for combating anxieties, and feel free to share and add your own. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a news article summarizing a study published in the American Journal of Respiratory and Critical Care Medicine. Researchers from the University of Leicester and the University of Nottingham, both located in the UK, revealed three new gene variants that are associated with idiopathic pulmonary fibrosis (IPF). Identifying and further understanding these genes will not only helps scientists improve their understanding of IPF, but also help them develop new treatments for the large number of people living with this disease around the world. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column about the drastic differences that this disease can have among patients. Following her own diagnosis of idiopathic pulmonary fibrosis (IPF), Charlene sought comfort in connecting with other patients to better understand their experience with this chronic lung disease. However, she noted that no two patients seemed to experience IPF the same way, which motivated Charlene to write about her experiences with IPF even more. She’s grateful to those who say her story resonates with them and encourages those struggling to connect with other patients also living with IPF, despite any differences in disease trajectories. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a recent column from a PF caregiver on the recent COVID-19 outbreak. While this pandemic and the rapid spread of this virus is indeed scary, making smart decisions through credible sources of information is important to reduce panic and fear. In this column, Christie writes about the harm that public panic is causing for our most vulnerable communities, including those living with pulmonary fibrosis. With the information surrounding COVID-19 changing ever so rapidly, please follow credible sites such as the Centers for Disease Prevention & Control (CDC) and the World Health Organization (WHO) to guide your actions and decisions about this novel coronavirus. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote recently about answering personal questions about her PF journey. It has been Charlene’s experience that others are curious about her idiopathic pulmonary fibrosis (IPF) diagnosis, and want to understand the impact this disease has had on her life. Unfortunately, this can include discussing taboo topics like infertility or death and dying. Charlene doesn’t mind addressing these questions though, because she believes answering personal questions about her experience with IPF only helps raise awareness about the impact of this disease on patients. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads from an article linking the decline of back muscle mass with poorer clinical outcomes for patients living with idiopathic pulmonary fibrosis (IPF). More specifically, the researchers found that a decline in the erector spinae muscles (ESM) which is a group of muscles running along both sides of the spine, can be an independent prognostic factor of various pulmonary diseases, such as COPD and IPF. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Senior Director of Multichannel Content, Michael Morale, discusses how a PF Foundation survey found that the vast majority of Americans are unfamiliar with PF symptoms. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote about the internal struggles she faces as a patient with IPF. The struggles and negotiations are a lot more frequent right now as Charlene fights hard to recover from an acute exacerbation, which has left her dependent on oxygen and assistance from others. Charlene recalls what has helped her complete difficult tasks in the past, such as negotiating the difficult item with a promise of a more enjoyable activity afterwards. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads from a news article summarizing many Rare Disease Day events around the world. This article helps others understand the history of Rare Disease Day along with the reason behind its efforts to bring awareness to approximately 7,000 rare diseases around the world. Did you know that an anticipationg 400-million people are thought to have a rare disease worldwide? Join this powerful movement by highlighting your own story of living with pulmonary fibrosis (PF) on February 29th, which is the oficial Rare Disease Day for 2020. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a recent news article based on a study from the Respiratory Research Journal examining prescription patterns for the two anti-fibrotic used for IPF. Ofev and Esbriet were both FDA-approved in 2014 as anti-fibrotic medications for the management of IPF, yet nearly half of all patients are prescribed the drug(s). This study examines prescription patterns for Ofev and Esbriet in an effort to better understand what barriers prohibit patients from being prescribed these anti-fibrotics. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article by co-columnist Christie Patient who is a caregiver for her Mom who received a successful double lung transplant. Christie’s words about the importance of compassionate communication resonate deeply with Charlene as she values her interactions with others, but realizes that sometimes they don’t know what to say in the face of a life-threatening illness like IPF. Sometimes that communication is jeopardized, where intent versus impact can be miscommunicated. Othertimes, communication is avoided all together. Christie’s tips to help communicate with someone struggling are important for everyone to consider. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article formulated from a study focused on assessing the severity and progression of IPF based on chest scans. A high-resolution computed tomography (HRCT) scan is one of the most well-known diagnostic tools in identifying pulmonary fibrosis, however, this new study published in the European Journal of Radiology believes it may also be helpful in predicting the progression of IPF along with the effectiveness of antifibrotic therapies. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall occasionally struggles with the question of “why” since being diagnosed with IPF nearly four years ago. Although she made a commitment to herself that she wouldn’t wallow in why this had to happen to her; sometimes out of anger, frustration or saddness, she can’t help but try to find answers about why she developed a terminal lung disease as a young adult. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a recently published article on a study investigating the link between high sources of bacteria in the lungs and the development or progression of IPF. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene
Marshall shares a column from a fellow colleague who is a caregiver for her Mom, who received a successful double lung transplant one year ago. Christie Patient’s column really resonates with Charlene right now, as she worries a lot about the caregiver’s in her life, especially since this latest and rapid decline in her health. Ensuring caregivers are cared for too is very important, and Christie highlights some unique ways on how to help the caregivers in your life. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Forum Moderator Charlene Marshall shares how commonly prescribed medication for cholesterol may benefit patients living with idiopathic pulmonary fibrosis. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene
Marshall recaps her latest hurdles after recovering from both pneumonia and influenza. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Charlene Marshall shares a recent news article about the Pulmonary Wellness Foundation (PWF) and their commitment to making online rehabilitation programs free for patients with rare lung diseases. PWF belongs to cardiopulmonary physical therapist Noah Greenspan, and is not only an innovative way to remove cost-prohibitive barriers to those who need pulmonary rehab, but is also focused on generating scientific data on the benefits of rehabilitation for pulmonary patients. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene
Marshall reads from a column she wrote on fearing the development of the IPF cough. She also talks about the terrifying effects of coughing regularly and how it can be exhausting both mentally and physically. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
PF News Columnist and Forum Moderator Charlene
Marshall summarizes a study about the relationship between viral infections and IPF. The study reveals that the presence of viral infections do increase the risk of developing IPF, however,
they do not necessarily cause a worsening, or exacerbation, of the disease. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Pulmonary Fibrosis News Columnist and Forum Moderator Charlene
Marshall discusses some of the unique issues that young adults (less than 40) living with IPF face as a result of their disease. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com
Director of Multichannel Content for Pulmonary Fibrosis News, Michael Morale, discusses a study that suggests how exhaled nitric oxide could be a potential biomarker for IPF severity and progression.
Are you interested in learning more about Pulmonary Fibrosis? If so, please visit https://pulmonaryfibrosisnews.com/
Director of Multichannel Content for Pulmonary Fibrosis News, Michael Morale, discusses a mouse study that states how inflammatory molecules can cause muscle damage in pulmonary fibrosis. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit https://pulmonaryfibrosisnews.com/
Director of Multichannel Content for Pulmonary Fibrosis News, Michael Morale, discusses a study that suggests that an herbal compound called Rosavin may help reduce PF-related scarring and inflammation.
Are you interested in learning more about Pulmonary Fibrosis? If so, please visit https://pulmonaryfibrosisnews.com/
Director of Multichannel Content for Pulmonary Fibrosis News, Michael Morale, discusses an Australian study that suggests that antacid therapy may not benefit IPF patients or impact outcomes.
Are you interested in learning more about Pulmonary Fibrosis? If so, please visit https://pulmonaryfibrosisnews.com/
Director of Multichannel Content for Pulmonary Fibrosis News, Michael Morale, discusses a trials’ data that shows how Ofev benefits IPF patients irrespective of initial prognosis.
Are you interested in learning more about Pulmonary Fibrosis? If so, please visit https://pulmonaryfibrosisnews.com/
Director of Multichannel Content for Pulmonary Fibrosis News, Michael Morale, discusses a mouse study that suggests cigarette smoke and Lipopolysaccharides aggravate lung fibrosis.
Are you interested in learning more about Pulmonary Fibrosis? If so, please visit https://pulmonaryfibrosisnews.com/
Director of Multichannel Content for Pulmonary Fibrosis News, Michael Morale, discusses how AstraZeneca turned to artificial intelligence to speed discovery of new medicines for IPF.
Are you interested in learning more about Pulmonary Fibrosis? If so, please visit https://pulmonaryfibrosisnews.com/
Director of Multichannel Content for Pulmonary Fibrosis News, Michael Morale, discusses how Patient Airlift Services, (PALS), uplifts the spirits of rare disease patients by offering free flights.
Are you interested in learning more about Pulmonary Fibrosis? If so, please visit https://pulmonaryfibrosisnews.com/