As a patient living with idiopathic pulmonary fibrosis (IPF), I can’t count the number of times that close friends and family members have asked me to describe what this disease feels like. While I do my best to share my experience with IPF, I’ve been unsatisfied with the explanations I’ve…
What Pulmonary Fibrosis Feels Like
There is no direct pathway when it comes to nutrition intervention for pulmonary fibrosis (PF), but a recent study found that nearly one-third of idiopathic PF (IPF) patients were malnourished, which indicates the intrinsic value of ensuring a proper…
This week, the world lost a champion. On June 3, 2019, Kim Fredrickson, a stoic and heroic inspiration to so many people living with pulmonary fibrosis (PF), died after nearly four months in the intensive care unit at UCSF Medical Center, where she was awaiting a life-saving…
After being diagnosed with a devastating disease like idiopathic pulmonary fibrosis (IPF), life tends to come to a momentary halt. I was OK mentally after the initial diagnosis, but I then contracted respiratory syncytial virus (RSV) in January 2015. This secondary illness, caused by my IPF diagnosis,…
Plans for a Phase 2 clinical trial of brilaroxazine, the lead candidate by Reviva Pharmaceuticals to treat idiopathic pulmonary fibrosis (IPF), were the focus of a recent and successful meeting between company officials and the U.S. Food and Drug Administration (FDA), Reviva announced. During this pre-Investigational New Drug (IND) Application meeting, the regulatory…
The Pulmonary Fibrosis Foundations (PFF)’ Patient Registry is providing valuable data to support pulmonary fibrosis research, as evidenced by multiple presentations at the 2019 American Thoracic Society (ATS) conference, held May 17–22 in Dallas, Texas. The PFF Patient registry, launched in 2016, is a comprehensive collection of patient…
Patients with idiopathic pulmonary fibrosis (IPF) produce a large amount of abnormal airway immune cells lacking an iron receptor that plays an important role in defending the lungs against pollutants and microbes, a study shows. The missing iron receptor is strongly correlated with poor clinical outcomes for patients, and…
Waiting for my mom, Holly, to receive a life-saving lung transplant has allowed me endless opportunity to explore the dynamics of fear and courage — something you will likely have picked up on if you’ve read any of my previous columns. These feelings have been the driving forces…
An international group of experts and advocates in idiopathic pulmonary fibrosis (IPF) and other interstitial lung diseases (ILDs) have joined to create the Open Source Imaging Consortium (OSIC), a not-for-profit effort to advance the diagnosis of these illnesses with the help of digital imaging and machine learning. According…
Sadly, many patients living with a life-threatening illness are likely familiar with a magnitude of feelings, fears, and emotions. There is no instruction manual on how to navigate life-threatening with a lung disease like idiopathic pulmonary fibrosis (IPF). I’ll never forget when doctors told me that due to my…
