I am a believer in the power of sharing stories. I believe that our narratives can shape and inspire others. As a columnist for Pulmonary Fibrosis News, I hope to help others by sharing my story about living with idiopathic pulmonary fibrosis (IPF) as a young adult. “When you stand…
Answering Personal Questions About My PF Journey
ART-123 (thrombomodulin alfa) failed to prolong the survival of patients with idiopathic pulmonary fibrosis (IPF) who have acute exacerbations, a study found. The study, “Thrombomodulin alfa for Acute Exacerbation of Idiopathic Pulmonary Fibrosis: A Randomized, Double-blind, Placebo-controlled Trial,” was published in the American…
A decline in back muscle mass is linked to poor clinical outcomes in patients with idiopathic pulmonary fibrosis (IPF), and can be used as an independent predictor of disease prognosis, a study found. The study, “Early decrease…
Feb. 29 is Rare Disease Day. Pulmonary fibrosis is one of the more than 6,000 known rare diseases. While PF may not have much in common with other diseases, those with PF share a connection with the one in 20 people worldwide who will live with a rare disease…
Rare Disease Day takes place on Feb. 29. Bionews Services, the parent company of this website, has taken on this initiative in an all-out effort to bring awareness to rare diseases, of which over 6,000 have been identified. I often ask myself, “What will you do to bring…
Starting a 501(c)(3) tax-exempt nonprofit isn’t easy, but the National Organization for Rare Disorders gave a few tips for those looking to begin the complex process in its Feb. 20 webinar. William Whitman…
I believe we all have an innate desire to feel connected with one another. It doesn’t matter whether that connection is when we’re empathizing with another patient plagued by the same disease, or when the anguish we experience matches that of a patient who is also a friend. One of…
Although 50,000 new cases of pulmonary fibrosis (PF) are diagnosed each year, a national survey found that 86 percent of U.S. residents are unfamiliar with the disease’s symptoms. The online National Awareness Survey from the Pulmonary Fibrosis Foundation (PFF), was completed by 2,013 U.S. adults, and…
Researchers at the University of Pittsburgh and the University of Delaware received funding for their research into innovative therapies for specific disease areas, including pulmonary fibrosis (PF). CSL Behring and the University City Science Center awarded $250,000 each to Cecelia Yates, PhD, from the University…
As I write this, I have been living with a rare disease for 1,413 days. On April 7, 2016, my life was transformed from an active young adult to a chronically ill patient when I was diagnosed with idiopathic pulmonary fibrosis (IPF). I remember how naive I was about…
