When I was diagnosed with idiopathic pulmonary fibrosis in January 2017, I wasn’t familiar with the disease, so I set out to learn everything I could about it. I wanted to understand each test I would undergo and each medication I was taking. After receiving the gift…
How to make your voice heard this PF Awareness Month
Supporters are gearing up to mark Pulmonary Fibrosis Awareness Month, set aside every September, to call attention to the rare lung disease that affects more than 250,000 individuals in the U.S. and 400,000 in Europe. For its part, the Pulmonary Fibrosis Foundation (PFF), with its campaign theme “Embrace Your…
What an interesting month August has been. Regular readers of my column may recall that the month started with a discussion of a new comorbidity in my post-transplant world. In subsequent columns, I wrote about how to explain your chronic illness, responding when opportunity knocks, and…
The U.S. Food and Drug Administration (FDA) has approved a new generic version of Esbriet (pirfenidone) for idiopathic pulmonary fibrosis (IPF), according to an announcement by Lupin, the global pharmaceutical company that will market the medication. As with the brand name medicine, Lupin‘s generic will be available…
Zelasudil, an experimental treatment for idiopathic pulmonary fibrosis (IPF) that’s now being tested in clinical trials, has been granted orphan drug status by the U.S. Food and Drug Administration (FDA). The FDA awards this designation to therapies with the potential to substantially improve care for people with rare diseases,…
The end of life is a period fraught with emotion. Losing someone who touched our lives creates a sudden void. I’ve witnessed alliances form following the passing of a family member, usually because there are opposing views of what the recently deceased would want. These rifts don’t always heal. But…
Many people with idiopathic pulmonary fibrosis (IPF) in the U.S. are not diagnosed early enough or given treatments helping to low its progression in a timely fashion, a large data study found. Although more is known about risk factors for IPF, delays are evident in diagnosis and the…
GB0139, an investigational inhaled treatment for idiopathic pulmonary fibrosis (IPF), failed to slow lung decline in IPF patients compared with a placebo, according to top-line data from the Phase 2b GALACTIC-1 trial. GB0139’s developer Galecto will discontinue the treatment. “We are very disappointed that the GALACTIC-1 results…
Idiopathic pulmonary fibrosis (IPF) is a complex disease that leads me and other patients on a complicated trajectory. Not only do I deal with its physical difficulties, such as acute exacerbations and oxygen dependency, but I also wrestle with its emotional and social complexities. Since being diagnosed…
Writing “Make Every Breath Count” for you each week is an opportunity for me to share my journey, which is a form of therapy for me. It’s an outlet to process my experiences with idiopathic pulmonary fibrosis (IPF) and receiving a bilateral lung transplant. Recently, my column…
