Not having control over a situation is one of the worst feelings; I wouldn’t wish it on anyone! Unfortunately, many patients living with chronic illness often feel this way, and we just have to learn to live with it. Following my 2016 diagnosis of idiopathic pulmonary fibrosis (IPF),…
Accepting that IPF exacerbations can be out of my control
What choices do you have when you have idiopathic pulmonary fibrosis (IPF) and lung transplant isn’t an option? I’ve been told by more than one patient that they were told to go home and spend the time they have left enjoying a rocking chair on the porch. Whether that is actually what they…
I always try to find meaning and purpose in the smallest of things, and that practice led me to a realization the other weekend. I was trying to nurse back to health one of our hens, which had become ill in the past month. We did everything we could to…
The U.S. Food and Drug Administration has given the green light for Mabwell Therapeutics to launch a clinical trial testing 9MW3811, its injectable treatment candidate for idiopathic pulmonary fibrosis (IPF) and cancer, according to a company press release. Last month, the National Medical Products Administration in…
The sound of overhead explosions and bright flashes of light caused by fireworks. The sound of squealing tires followed by breaking glass. The smell of smoke and the sound of a smoke detector. The sound of the alarm on your oxygen concentrator in the middle of the night. Each of…
The Phase 3 REBUILD clinical trial, which tested Bellerophon Therapeutics‘ inhaled nitric oxide therapy INOpulse in people with pulmonary fibrosis at risk of developing pulmonary hypertension, failed to meet its primary or secondary goals, according to recent top-line data. “The REBUILD study did not match the outcomes we…
When used in a real-world setting, Ofev (nintedanib) significantly prolonged the survival of idiopathic pulmonary fibrosis (IPF) patients, according to an analysis of Czech registry data. Yet, Ofev was not associated with a significant slowing of lung function decline or with other estimations of disease progression. Findings were…
I have learned a lot about idiopathic pulmonary fibrosis (IPF) over the years. Following my diagnosis in 2016, I read everything I could about this life-threatening lung disease through online forums, research articles, and various websites. My biggest takeaway was that disease progression is nonlinear and looks…
The calendar of any rare disease patient is a marvel, with its complexity and efficiency. I’ve become both a master and a failure in constructing mine. I continue to miss the mark on making time to live life to the fullest. My schedule gained new elements when I was…
Brilaroxazine, Reviva Pharmaceuticals’ experimental therapy for idiopathic pulmonary fibrosis (IPF), was found to reduce lung inflammation and fibrosis, or scarring, in a rat model of the disease. The treatment also improved lung function and extended survival in the animals, the study showed. Titled “Evaluation of Brilaroxazine (RP5063)…
