I recently received my first Rituxan (rituximab) infusion. Most people might think of treatment as starting when the medication enters the IV. But for me and many others, it starts long before that, with paperwork, phone calls, authorizations, appointments, and a level of persistence that we patients rarely get credit…
The invisible work behind treatment and being a patient with chronic illness
Familial pulmonary fibrosis (FPF) makes up a notable portion of all cases of interstitial lung disease, disorders marked by scarring in the lungs, and tends to appear differently from non-familial versions of the disease, a large, multicenter study has found. While survival outcomes were similar between the two groups,…
Storytelling is a learning tool as old as time. History is made up of eyewitness accounts and recollections of a certain time or place, often augmented by official records. I’ve seen discussions recently on social media and in the Pulmonary Fibrosis News Forums asking for people to describe the…
Note: This column describes the author’s husband’s own experiences with anti-fibrotic medications. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. For those of you who haven’t read this column before, my name is Kylene, and my husband, Donnie, was diagnosed…
The need for naps tends to evolve throughout one’s lifetime. When my kids were babies, it was good to let their young bodies rest midday, giving their parents a break and helping them gradually adjust to longer days. As they got older, they outgrew the need for naps. I had…
Vaccines based on protein fragments unique to the scar-forming cells that drive idiopathic pulmonary fibrosis (IPF) significantly reduced lung scarring in both mouse models and human cell experiments, according to a study. While the vaccine approach showed promise in mice, advancing it to clinical trials will require patient selection…
Are you familiar with the phrase “one size fits all?” When you see it, how do you react? For me, unless it’s on a baseball cap with an adjustable strap, I’m skeptical. But I’m not always a skeptic. When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in…
A regulatory committee of the European Medicines Agency is urging approval of the oral therapy Jascayd (nerandomilast) in the European Union for treating adults with idiopathic pulmonary fibrosis (IPF) and progressive pulmonary fibrosis (PPF), two forms of the respiratory disease. While the European Commission — which makes all final…
Someone out there holds the key piece of evidence needed to advance research toward a better therapy, treatment, or cure for interstitial lung diseases, including pulmonary fibrosis (PF). Since my diagnosis of idiopathic pulmonary fibrosis (IPF) nearly 10 years ago, I have met some of the smartest people…
Two Phase 3 clinical trials testing Tyvaso (treprostinil) in people with idiopathic pulmonary fibrosis (IPF) both met their main goals, showing that the inhalation therapy significantly outperformed a placebo at slowing the decline in lung function among IPF patients. With these data in hand, Tyvaso’s developer, United…
