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…
Unpacking the emotional layers of transplant: guilt, gratitude, and grief
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…
My health journey began with a rare illness called lymphocytic interstitial pneumonia (LIP). Coping with the diagnosis was hard, but I knew I could do it. What I didn’t expect was that I’d have to handle several other conditions on top of it. I’ve also been diagnosed…
AP02, an inhaled formulation of nintedanib being developed by Avalyn Pharma, was well tolerated by both healthy people and individuals with idiopathic pulmonary fibrosis (IPF) who took part in a Phase 1 clinical trial. The open-label study (ACTRN12620001141932) was designed to test the safety and tolerability…
Treatment with Nuformix’s experimental therapy NXP002 reduced markers of fibrosis, or tissue scarring, in a laboratory model of idiopathic pulmonary fibrosis (IPF), according to new data announced by the company. Adding NXP002 to standard-of-care IPF treatments — Esbriet (pirfenidone) and Ofev (nintedanib) — led to a…
Writing can be therapeutic. As a therapist, I often encourage my clients to write as a way to process trauma, release emotion from their body, or organize their thoughts ahead of a difficult conversation. Whether they’re writing a letter, column, or journal entry that they plan to share or…
