My 2017 diagnosis of idiopathic pulmonary fibrosis changed all our plans. Over the course of our journey, my wife, Susan, found herself responsible for many tasks I’d normally take on inside and outside of our home. Susan has told many people over time that if she asked me…
My Wife’s Survival Guide to Our House: Our Just-in-Case Manual
The Pulmonary Fibrosis Foundation’s PFF Care Center Network (CCN) now includes 74 medical centers in 34 U.S. states, after six more sites specializing in pulmonary fibrosis (PF) diagnosis, treatment, and patient support joined the nationwide program. “Our new PFF Care Center Network sites offer much-needed comprehensive care for…
My friend Chase and I sat in my treehouse one sunny afternoon looking across the arid valley between my childhood home and the towering crest of the Sierra Nevada. We were 10. We noticed a plume of smoke rising from the hills, which soon turned into a blaze that destroyed…
Pulmonary fibrosis has stolen a lot from me over the years. Like most people, I’d never heard of this cruel and life-threatening disease before my diagnosis of idiopathic pulmonary fibrosis (IPF) in 2016. I also had no idea how many other body systems are affected by chronic…
Growing up in the Mexican culture, I was introduced to a lot of home remedies to treat everything — coughs, colds, stomachaches, fevers, bug bites, and even “el mal de ojo,” or the “evil eye.” Mexican folk medicine was an important part of my upbringing, but as an…
When I see an adult acting out in public, I find it annoying. If a front-line healthcare worker asks you to properly wear a mask in a clinical setting, please adjust your mask. Complaining about the rules and overreach of the U.S. Centers for Disease Control and Prevention (CDC)…
The U.S. Food and Drug Administration (FDA) has granted orphan drug designation to EI-1071, an oral anti-inflammatory that Elixiron Immunotherapeutics is developing for the treatment of idiopathic pulmonary fibrosis (IPF). Orphan drug status is awarded by the FDA to therapies designed to improve medical care for rare disorders —…
Algernon Pharmaceuticals’ experimental oral therapy NP-120 (ifenprodil) significantly reduced coughing in people with idiopathic pulmonary fibrosis (IPF), according to a new analysis of top-line data from a proof-of-concept Phase 2a clinical trial. The analysis showed the therapy was much more effective at easing cough than previously reported. NP-120’s “potential…
The day you’re diagnosed with a chronic illness is generally a day you won’t forget. The words from my doctor, Steven Nathan, made sense in the moment. They also became a collection of sound bites. They fall into three distinct categories: 1) you have, 2) you can expect, and…
A total of 30 patient advocacy groups working to further understanding and the needs of people living with rare diseases have been selected to receive a Horizon Therapeutics‘ #RAREis Global Advocate Grant. Winners of this year’s inaugural awards are spread across nine countries and represent a total of 29 rare…
