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…
From Fearful to Fierce: How IPF Helped Me Find My Fighting Spirit
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…
As an ex-college football player, I get goosebumps over the sweet smell of freshly cut grass in the fall — a sign that football season is upon us. It’s too bad that it puts me at risk for a potentially deadly disease: aspergillosis. Aspergillosis is a fungal disease caused…
The first patient was dosed in a Phase 2b clinical trial investigating the safety and effectiveness of Respivant Biosciences’ inhalation therapy candidate RVT-1601 for idiopathic pulmonary fibrosis patients with persistent cough. Respivant Biosciences also has launched a new website — IPFcough.com — to increase awareness about the effects of cough…
An idiopathic pulmonary fibrosis (IPF) treatment candidate that mimics a tiny RNA molecule lowered the production of key profibrotic proteins and blocked fibrosis development in a mouse model of the disease. The data was presented recently at the 2019 American Thoracic Society (ATS) Conference in Dallas, in a poster titled “…
RaDaR, the catchy new name for the U.S. government-run Rare Diseases Registry Program, aims to help patient advocacy groups with limited resources build their own disease registries. The site was developed by the National Center for Advancing Translational Sciences (NCATS), a division of the National Institutes of…
In January 2018, I lost my cousin to lung cancer. It was at stage 4 by the time he was diagnosed, and his decline was rapid and unexpected. One day, he was fine, and the next, he was gone. I had never lost someone so close to me, and it…
Promedior‘s investigational therapy for idiopathic pulmonary fibrosis (IPF) — PRM-151 — continues to benefit patients after 76 weeks of treatment, slowing the decline in lung function and exercise capacity, while maintaining a similar safety profile as previous studies of PRM-151, an extension study shows. The results were…
An unfortunate reality of living with a chronic illness is that most people will never fully understand your experience. They can’t understand the complexity of living with a chronic lung disease or other debilitating chronic illnesses. Even when someone else has the same diagnosis as you, their experience likely…
