Last week, we celebrated the one-year anniversary of my mom, Holly, getting on the lung transplant list. If you’ve been a reader of mine for a while, you know that getting on the list was not a smooth process for us. She was pretty…
A Call to Action for Unlisted Pre-transplant Patients
Female sex, younger age, and a better lung function at time of diagnosis tend to support a a better overall prognosis among people with idiopathic pulmonary fibrosis (IPF), a large registry-based study reports. In contrast, the presence of pulmonary hypertension (PH), lung cancer,…
At my last doctor’s appointment, my physician asked me how I felt. I replied, “Some days, I feel invincible.” She gave me the biggest smile and told me how happy she was that I was doing so well. While I get colds and sometimes contract a virus, when I…
An emerging healthcare priority in the past decade has been patient-centered care. It is an idea that many facilities are still trying to define. Patient-centered care is simple to me: person first, patient second. I’m grateful to my healthcare team for getting this right. Before my diagnosis with…
The antibiotic azithromycin (AZT), frequently prescribed for fighting bacterial infections, has anti-fibrotic effects and promotes the death of fibroblasts — cells promoting fibrosis, or scarring — in people with idiopathic pulmonary fibrosis (IPF), a new study shows. These findings suggest the potential of AZT as a therapeutic…
The protein peroxiredoxin-4 may be a useful blood marker in the early detection of acute exacerbation of idiopathic pulmonary fibrosis (AE-IPF), a study has found. The finding was described in the article “The overexpression of peroxiredoxin-4 affects the progression of idiopathic pulmonary fibrosis,” which was published…
You may be familiar with the proverb, “It takes a village to raise a child.” The phrase is believed to have originated from the Nigerian Igbo culture and is often cited in literature and popular media, most famously in Hillary Rodham Clinton’s 1996 book, “It Takes a Village.”…
New York cardiopulmonary physical therapist Noah Greenspan has launched the Pulmonary Wellness Foundation (PWF), a nonprofit group that provides free online information on a range of prevalent, rare and ultra-rare pulmonary diseases for those who can’t afford to pay for it. PWF specifically targets patients with pulmonary fibrosis,…
I was recently brainstorming ideas with other rare disease columnists about how to support someone admitted for a long hospital stay. I started thinking about the ways that caregivers need support, too. It’s easier to be the person who can walk out of the hospital, but caregivers still deal…
Galapagos NV announced that its Phase 2 PINTA trial, evaluating the safety and effectiveness of oral GLPG1205 in people with idiopathic pulmonary fibrosis (IPF), has completed patient recruitment ahead of schedule. GLPG1205 is a small molecule designed to specifically block the activity of GPR84, a protein that…
