I’ve been feeling vulnerable lately. I feel vulnerable having pulmonary fibrosis (PF), being disabled, using supplemental oxygen, and being ever-increasingly more dependent on others. What do I mean by vulnerable? Oxford English Dictionary defines “vulnerable” as “exposed to the possibility of being attacked or harmed, either physically…
I’m Feeling Vulnerable as My PF Progresses
A Rare Conditions Care Value (RCCV) program providing access to “second opinions” for patients with rare diseases like idiopathic pulmonary fibrosis (IPF) was recently launched by two U.S. health management companies, Express Scripts and Pinnacle Care. Second Opinion, as the service is called, offers precisely that— another opinion…
As a continuation of my “Gratitude Miniseries,” a monthly column highlighting the things I’ve enjoyed over the past four weeks, I am happy to report that May was a better month for me. As I shared in my previous column, April was tough, and although…
Supported by an educational research grant from Genentech, the France Foundation is launching a mentoring and relationship-building program for community healthcare providers to improve how patients with idiopathic pulmonary fibrosis (IPF) are diagnosed and treated. The program aims to bring front-line health practitioners into closer and long-term contact with…
As President Trump signed the recently passed Right to Try legislation into law in a White House ceremony, Jordan McLinn of Indianapolis tried twice to embrace him. The third time, 9-year-old Jordan finally got the hug he wanted — as well as a kiss on the forehead. The video of…
A new lung-on-a-chip technology models the mechanical changes that occur in the lungs during idiopathic pulmonary fibrosis, possibly allowing for a faster and less expensive screening of potential new anti-fibrotic therapies, a study reports. “Obviously it’s not an entire lung, but the technology can mimic the damaging effects of lung…
Patients living with a life-threatening lung disease might struggle to breathe in humid weather. However, since each patient’s condition is unique, some people living with IPF find that humidity isn’t as bothersome as frigid temperatures are for their lungs. Following my IPF diagnosis, my pulmonologist gave me advice on…
A pulmonologist’s characteristics — such as the nature of the practice and previous treatment experience — can influence when anti-fibrotic therapy use is initiated in newly diagnosed idiopathic pulmonary fibrosis (IPF) patients, a study based on a U.S. survey found. This finding adds to an understanding of the factors, besides patient preference,…
Should scientists have the right to edit the genes of future generations to eliminate hundreds, if not thousands, of potential rare diseases? Or should researchers restrict their use of genome editing to somatic cells, so that they don’t pass changes on to the next generation? What about stem-cell research, three-parent…
Seasonal flares of disease activity that can lead to idiopathic pulmonary fibrosis (IPF) patients being hospitalized, especially in the winter months, appear to be effectively countered by treatment with Esbriet (pirfenidone) compared to placebo, a new retrospective analysis of data from Phase 3 clinical trials shows. Results were presented by Brett Ley,…
