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Pulmonary Fibrosis News Moderator started the topic Pandemic Protocols Show World How Post-transplant Paranoia Feels in the forum Research and Development 3 years, 2 months ago
In what ways is this episode of social distancing different from or the same as other times you’ve socially isolated yourself in the past?
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Pulmonary Fibrosis News Moderator started the topic IPF Patient Leads Lung Transplant Foundation to Help Others in the forum Research and Development 3 years, 2 months ago
Jeffrey Goldstein, a person with idiopathic pulmonary fibrosis, leads the Lung Transplant Foundation’s efforts to fund research and help patients. Read about his efforts here.
Which research projects are you most excited about?
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Pulmonary Fibrosis News Moderator started the topic Engineered Cell Models Seen as Best for Capturing Living Lung Response in the forum Research and Development 3 years, 2 months ago
A comparison of lung and trachea models used to understand or treat diseases like pulmonary fibrosis found engineered ones most realistic. Read more here.
Did you find this information to be helpful?
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Pulmonary Fibrosis News Moderator started the topic Pulmonary Fibrosis Increases Heart Disease Risk, Real-world Data Suggests in the forum Flash Briefings & Podcasts 3 years, 2 months ago
As a young adult living with a chronic lung disease, Charlene Marshall has met several other patients navigating life with both an interstitial lung disease (like IPF) or heart-related issues. About two-and-a-half years into her own IPF diagnosis, Charlene was noted to experience cardiac issues as well, leading to a diagnosis of pulmonary…[Read more]
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Pulmonary Fibrosis News Moderator started the topic Tips for Combating Anxiety Amid the COVID-19 Pandemic in the forum Flash Briefings & Podcasts 3 years, 2 months ago
Since being diagnosed with idiopathic pulmonary fibrosis (IPF) nearly four years ago, Charlene Marshall’s anxiety has worsened. She feels it especially prevalent right now as the novel coronavirus (COVID-19) is rapidly making its way around the globe, and health projections say many people will be infected. Zooming in on our mental health a…[Read more]
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Pulmonary Fibrosis News Moderator started the topic 3 IPF Gene Variants Found in Large Genome-wide Analysis, Study Reports in the forum Flash Briefings & Podcasts 3 years, 2 months ago
As a patient living with idiopathic pulmonary fibrosis (IPF) for nearly four years, Charlene Marshall hopes that the research being conducted around the world not only helps find a cure for this disease, but helps new treatments emerge that will improve patients quality of life. Understanding gene variants and their role in fibrosis…[Read more]
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Pulmonary Fibrosis News Moderator started the topic Our Pulmonary Fibrosis Journeys Can Drastically Differ in the forum Flash Briefings & Podcasts 3 years, 2 months ago
One of the difficulties of pulmonary fibrosis (PF), among many other things, is how the disease manifests itself so differently among patients. One of the difficulties of pulmonary fibrosis (PF), among many other things, is how the disease manifests itself so differently among patients.
This can lead to delayed diagnosis’ or t…[Read more]
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Pulmonary Fibrosis News Moderator started the topic Public Panic Over COVID-19 Harms Vulnerable Communities in the forum Flash Briefings & Podcasts 3 years, 2 months ago
Like most patients living with pulmonary fibrosis (PF) and thus, a compromised immune system, Charlene Marshall can’t help but worry about the rapid spread for COVID-19. Knowing the risks associated with contracting the virus as a patient with decreased respiratory function is worrisome, but similar to Christie Patient (author of this c…[Read more]
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Pulmonary Fibrosis News Moderator started the topic Answering Personal Questions About My PF Journey in the forum Flash Briefings & Podcasts 3 years, 2 months ago
As a trained family therapist, Charlene Marshall knows the importance of acknowledging the hard topics when trying to process difficult life events or situations. This includes a diagnosis of a fatal pulmonary disease, like IPF. Unfortunately, this progressive lung disease has forced Charlene to think about the things she will likely miss out…[Read more]
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Pulmonary Fibrosis News Moderator started the topic Back Muscle Shrinkage Tied to Poor IPF Outcomes, Study Finds in the forum Flash Briefings & Podcasts 3 years, 3 months ago
Research continues to emerge from around the world to help patients, researchers and physicians better understand idiopathic pulmonary fibrosis (IPF). Since there is currently no cure for this progressive lung disease, understanding factors that may contribute to poorer patient outcomes is imperative in helping patients live a longer…[Read more]
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Pulmonary Fibrosis News Moderator started the topic Vast Majority of Americans Are Unfamiliar With PF Symptoms in the forum Flash Briefings & Podcasts 3 years, 3 months ago
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: pulmonaryfibrosisnews.com
What are your thoughts about this…[Read more]
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Pulmonary Fibrosis News Moderator started the topic Negotiating With My Emotional Self: Internal Struggles of an IPF Patient in the forum Flash Briefings & Podcasts 3 years, 3 months ago
Many patients living with IPF fear an acute exacerbation, and for good reason. Recovering from such an event is very difficult, as Charlene Marshall is experiencing daily right now. Sometimes the mental anguish of a chronic illness is just as daunting as the physical, but Charlene is trying hard to work through her recovery by negotiating with…[Read more]
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Pulmonary Fibrosis News Moderator started the topic Patients, Supporters Worldwide Recognizing Rare Disease Day 2020 in the forum Flash Briefings & Podcasts 3 years, 3 months ago
Charlene Marshall never expected to be an advocate for any type of rare disease, especially one that she has. However, following her own diagnosis of IPF nearly four years ago, Charlene knew she had two choices. She could live miserably and be angry at the fact that she was diagnosed with a life-threatening lung disease, or she could help…[Read more]
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Pulmonary Fibrosis News Moderator started the topic Nearly 40% of IPF Patients in the US Not Prescribed Esbriet or Ofev Despite Effectiveness, Study Reports in the forum Flash Briefings & Podcasts 3 years, 3 months ago
A popular discussion topic among the Pulmonary Fibrosis News Forums is how to manage the side effects associated with either one of the two FDA-approved anti-fibrotic therapies for IPF. It appears from the article cited within this flash briefing, that concerns with side effect management can be prohibitive to patients and physicians possibly…[Read more]
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Pulmonary Fibrosis News Moderator started the topic How to Curate Compassionate Communication in the forum Flash Briefings & Podcasts 3 years, 3 months ago
Similar to the author of this column, Charlene Marshall values communication with others, and knows that words are how we all convey thoughts and ideas. Unfortunately since Charlene’s diagnosis of IPF, a cruel and life-threatening lung disease, communication with others hasn’t been as easy as it was before she got sick. Irritability, fru…[Read more]
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Pulmonary Fibrosis News Moderator started the topic Software May Predict IPF Progression Based on Chest Scans in the forum Flash Briefings & Podcasts 3 years, 3 months ago
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.
Before being diagnosed with IPF nearly four years ago, Charlene Marshall remembers the process of all the diagnostic testing used to help physicians u…[Read more]
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Pulmonary Fibrosis News Moderator started the topic I Did Everything Right, So Why Did I End Up With Pulmonary Fibrosis? in the forum Flash Briefings & Podcasts 3 years, 3 months ago
When diagnosed with IPF four years ago, Charlene Marshall regularly questioned what exposures she may have had that led to the development of IPF. To her knowledge, she was never exposed to anything of concern, but knows that exposure to bacteria from external or environmental factors is often out of our control, so she’s left to ponder the q…[Read more]
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Pulmonary Fibrosis News Moderator started the topic IPF Progression Linked to High Number of Bacteria in Lungs in the forum Flash Briefings & Podcasts 3 years, 3 months ago
After being diagnosed with IPF nearly four years ago, Charlene Marshall regularly questioned what exposures she may have had that led to the development of IPF. To her knowledge, she was never exposed to anything of concern, but knows that exposure to bacteria from external or environmental factors is often out of our…[Read more]
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Pulmonary Fibrosis News Moderator started the topic Caregivers Need Care, Too. in the forum Flash Briefings & Podcasts 3 years, 4 months ago
Charlene Marshall has often said that while she wishes IPF never came into her life, she’s glad to be the patient instead of the caregiver. This is only because Charlene couldn’t imagine the physical stress and emotional toll the role of caregiving has on loved ones. She…[Read more]
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Pulmonary Fibrosis News Moderator started the topic Commonly Prescribed Medication For Cholesterol May Benefit IPF Patients in the forum Flash Briefings & Podcasts 3 years, 4 months ago
For Charlene Marshall, a major takeaway from attending the Pulmonary Fibrosis Foundation (PFF) Summit in Texas last fall, was how much research is being conducted for those living with IPF. Some of the most fascinating research is investigating how medications that have been on the market for a number of years to help other disease, may help…[Read more]
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