Life with a rare disease is often a journey of discovery. With each test comes the possibility that my healthcare team will identify a new issue I’m facing. I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017 and had a bilateral lung transplant four years later. Because of…
How ongoing surveillance helps my healthcare team help me
Almee, an investigational app that offers personalized treatment to help people with pulmonary fibrosis (PF), was found to significantly reduce anxiety levels in PF patients who participated in a pivotal randomized study. Positive results from the COMPANION (NCT05330312) study were announced by Alex Therapeutics and Vicore…
Traveling is complicated with a chronic illness. When you require supplemental oxygen to breathe or struggle with hypoxia on airplanes, things become even more challenging. This has been my experience with idiopathic pulmonary fibrosis (IPF). IPF is a life-threatening and progressive lung disease that often leads to…
What happened? Where did 2023 go? How can it be Jan. 2, 2024? Time seemed to drag when COVID-19 began to ravage the U.S. Many people with rare diseases, including the pulmonary fibrosis (PF) community, were heavily affected by the isolation. And not just patients, but caregivers, too.
Berberine, a naturally occurring plant compound, eased the signs and symptoms of pulmonary fibrosis (PF) in a mouse model where the disease was triggered by exposing animals to fine particulate matter found in air pollution. The findings “offer novel insights into the mechanisms underlying the beneficial effects of…
For those who may be reading my column for the first time, it may be helpful to understand where I’m at in my medical journey and how it began. In late 2016, a chest X-ray indicated that something was wrong with my lungs. I was referred to a pulmonologist,…
A Phase 2a trial is recruiting people with idiopathic pulmonary fibrosis (IPF) to assess the effectiveness of GRI-0621, GRI Bio‘s investigational natural killer T-cell (NKT)-targeted therapy. The multicenter biomarker study, which was cleared to start by the U.S. Food and Drug Administration, is expected to have early results…
‘Tis the season of giving, a time when the spirit of benevolence fills the air. During the holidays, we’re encouraged to give wholeheartedly and with grace, which creates an atmosphere of joy and peace. However, the season’s festivities prompt some reflection on the nature of giving. Why limit this…
I’ve been involved in equity issues for most of my adult life and have been an advocate for the rare disease community for decades. In the biblical story of David and Goliath in 1 Samuel 17, David had no intention of shying away from Goliath. Neither do I.
Trevi Therapeutics has launched a Phase 2b clinical trial testing therapeutic candidate Haduvio (nalbuphine extended-release tablets) for the treatment of chronic cough in people with idiopathic pulmonary fibrosis (IPF). The Phase 2b trial, CORAL (NCT05964335), plans to enroll about 160 adults with IPF and chronic cough. No…
