As I write this, I have been living with a rare disease for 1,413 days. On April 7, 2016, my life was transformed from an active young adult to a chronically ill patient when I was diagnosed with idiopathic pulmonary fibrosis (IPF). I remember how naive I was about…
IPF Has Changed My Life: Celebrating Rare Disease Day
Hepion Pharmaceuticals‘ CRV431 lowers the production of fibrosis-associated proteins in a variety of cell types, including lung cells, new data from the company show. CRV431 is a small molecule being developed as an investigational treatment for non-alcoholic steatohepatitis (NASH) and viral hepatitis-induced liver disease. Both of these conditions are…
Use of INOpulse — inhaled nitric oxide — lessened pulmonary arterial pressure, and the resistance to blood flow in arteries that supply blood to the lungs, in people with pulmonary hypertension (PH) associated with pulmonary fibrosis (PH-PF), top-line results from a Phase 2 trial show. These results add to…
Much of my young adult life was molded by my fears. I have talked about the effects in past columns, and how my mom’s hospitalization helped me find my courage. After surviving months in the ICU, a double-lung transplant, and a rocky start to her recovery, my mom is…
An abundance of events are afoot around the world to mark Rare Disease Day 2020 on Feb. 29. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…
When thinking of chronic lung conditions, you may visualize the use of supplemental oxygen or a person struggling with physically demanding tasks, such as walking up a flight of stairs. People living with idiopathic pulmonary fibrosis (IPF) often struggle with daily tasks. As our disease progresses, our ability to exchange oxygen…
During the course of her mother’s six-year battle with idiopathic pulmonary fibrosis (IPF), caregiver Taleena Koch felt alone. Now Koch, 54, hopes to change that feeling for the thousands of people involved in her Breathe Support Network. Her nonprofit group offers an online discussion…
High levels of the protein osteopontin in the blood are associated with acute exacerbations and a higher risk of death in people with idiopathic pulmonary fibrosis (IPF), a study found. These findings suggest that osteopontin may potentially be used in the future as a biomarker of IPF…
In the U.S., 61% of people with idiopathic pulmonary fibrosis (IPF) are prescribed approved anti-fibrotic therapies, namely Ofev (nintedanib) and Esbriet (pirfenidone), analysis of data from the U.S. Pulmonary Fibrosis (PF) Foundation Patient Registry shows. In turn, almost 40% of IPF patients are not prescribed either…
When my mom, Holly, had an acute exacerbation of her idiopathic pulmonary fibrosis, she was transported to the University of California, San Francisco (UCSF) Medical Center. She spent the first three weeks in the intensive care unit recovering enough to get on the lung transplant list. When at last…
