Rare diseases affect about 30 million Americans — roughly the same number as those with type 2 diabetes. Yet only 5 percent of the estimated 7,000 rare diseases known to science have cures or treatments approved by the U.S. Food and Drug Administration (FDA). Raising awareness of those illnesses and highlighting…
NIH Rare Disease Day Highlights Joint Networks Advancing Array of Research
Measuring the loss of skeletal muscle mass in the thoracic area using computed tomography (CT) scans may predict clinical outcomes such as survival in patients with idiopathic pulmonary fibrosis (IPF), according to a study. The study, “Thoracic skeletal muscle quantification: low muscle mass is related with worse prognosis…
Months before my idiopathic pulmonary fibrosis (IPF) diagnosis, my wife Rebecca and I met a young engaged couple. Stephanie was a teacher at the school where I worked in Ohio. She’s from Kansas, so I affectionately refer to her as “Dorothy.” Her fiancé, Connor, was in his third year…
The Envisia Genomic Classifier, Veracyte‘s genomic test for improved diagnosis of idiopathic pulmonary fibrosis (IPF), was granted full U.S. coverage by Medicare. The coverage…
Novel selective blockers of the NOX4 enzyme could ease oxidative stress and the subsequent development of fibrosis in lungs and other organs, according to scientists at the University of Arizona. The potential treatments have been licensed to a startup called Fibronox to speed up their development. NOX4, or NADPH…
Upon being diagnosed with idiopathic pulmonary fibrosis (IPF) in 2016, I predicted that many of my relationships would change. What I didn’t know, which might have been the scariest of all the “unknowns,” was how those relationships would change. I often wondered: Will my relationships with my parents get…
The Feldman Family Foundation is hosting a pulmonary fibrosis fund-raising event — its 6th Annual Texas Hold ‘Em Tournament and Casino Night — on Saturday (March 2), at the Chevy Chase Country Club in Wheeling, Illinois. The Feldman Family Foundation was founded in 2013 in honor of…
Many of us living with chronic illness know the importance of keeping specialist appointments because of the length of time it can take to reschedule them. The decision to cancel a consultation due to unforeseen circumstances can be agonizing. I felt that regret today when I chose to…
In November 2012, I began to experience shortness of breath. My throat and esophagus also felt somewhat cold, like I was breathing and exhaling cold air even when I was in the house. I didn’t think anything of it and didn’t attribute these symptoms to an illness. On a trip…
Lung cancer patients with underlying idiopathic pulmonary fibrosis (IPF) treated with proton radiation therapy live longer than those treated with X-ray irradiation, a study shows. Additionally, fewer occurrences of treatment-related lung complications were reported in proton therapy-treated patients. The study, “Preliminary result of definitive radiotherapy in patients with non-small cell…
