Dealing with the financial expenses associated with having a rare or chronic illness like pulmonary fibrosis (PF) can be tough. I’m responsible for making sure that I receive all the PF treatments available to me, but I’ve discovered that they come with a hefty price tag. Among the…
American comedian Bill Engvall is known for his punchline “Here’s your sign,” which he’d often say in response to an outrageously obvious question. I recently experienced two “here’s your sign” moments of my own after wondering if I’d contracted the virus that causes COVID-19. On Monday, April 3, I…
One-year of high-dose AP01, Avalyn Pharma’s inhaled pirfenidone solution, slowed lung function decline in people with idiopathic pulmonary fibrosis (IPF). That’s according to top-line data from the ongoing open-label extension AP01-005 study (2020-005103-39) that’s testing a 100 mg high dose of AP01, administered twice daily. The results align…
By the end of this month, the Pulmonary Fibrosis Foundation (PFF) is hoping to bump up patient and caregiver enrollment — by at least 500 people — in its pulmonary fibrosis (PF) community registry. April is PFF Community Registry Recruitment Month, and the foundation is trying to…
This week, while my husband, Jonny, and I sat at home in isolation after our tests for COVID-19 were positive, I struggled to feel joy. My friend sent me a video of someone singing a popular emo anthem while holding a wet strawberry — its soggy leaves pasted to…
ZEPHYRUS-2, the second Phase 3 clinical trial testing the experimental therapy pamrevlumab in people with idiopathic pulmonary fibrosis (IPF), has finished recruiting patients, according to its developer FibroGen. “We are pleased to announce the completion of enrollment for our second Phase 3 study of pamrevlumab in IPF,” Mark…
A recurring topic of discussion among the rare disease community is whether people would consider donating an organ. I’ve heard varied comments, such as “No one would want any of my organs,” “My only good organ is my transplanted one, and it cannot be reused,” and “I don’t want to…
The protein matrix metalloproteinase 19 (MMP19) plays an important role in regulating cellular processes in the lining of blood vessels that contribute to lung fibrosis occurring in idiopathic pulmonary fibrosis (IPF), a new study reveals. “Vascular integrity regulated by MMP19 could be a promising therapeutic target for suppressing pulmonary…
I wouldn’t wish the effects of a chronic cough on anyone. The cough that often accompanies idiopathic pulmonary fibrosis (IPF) is dry and persistent. It’s difficult to address and find relief, and it can be exacerbated by several things. That’s been my experience since I was diagnosed…
On Tuesday, Sept. 15, 2020, I received an email asking if I would participate in an exercise on how deceased donor organs are allocated. The opening statement read: “The Organ Procurement and Transplantation Network [OPTN] is developing a more equitable system of allocating deceased donor organs. The new approach, continuous…
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