Kim Fredrickson, a patient columnist for Pulmonary Fibrosis News, is very aware that PF is shortening her lifespan, and it’s been hard for her to face her mortality. This reality guides how she spends her time, energy, and the decisions she makes. It also motivates her to get her…
Esbriet (pirfenidone) seems to have diminishing therapeutic effect after six months of treatment and possibly no benefit after one year in idiopathic pulmonary fibrosis (IPF) patients with advanced disease, a Greek retrospective study shows. The study, “Safety and efficacy of pirfenidone in severe Idiopathic Pulmonary Fibrosis: A real-world observational…
One of my frustrations as a pulmonary fibrosis patient is finding solid information about what to expect as my PF progresses. I’ve asked several doctors what to expect during the end stage of PF, but often get the same answer: “We’re not there, no need to talk…
Treatment with Esbriet (pirfenidone) reduces cough in patients with idiopathic pulmonary fibrosis (IPF), a new European study finds. The study, “Effect of pirfenidone on cough in patients with idiopathic pulmonary fibrosis,” appeared in the European Respiratory Journal. Its senior author was Dr. Marlies Wijsenbeek of the respiratory…
When you have a chronic illness such as pulmonary fibrosis, it is only natural that you may find yourself spending a lot of time thinking about some of the important life events and milestones that you may not get to experience. MORE: Learn about the challenges patients with pulmonary fibrosis…
Since being diagnosed with idiopathic pulmonary fibrosis (IPF), I have crossed paths with many different people with varying responses to my disease. Because I am only 29, I am regularly reminded that being diagnosed with this disease so young is rare and, as a result, people are often…
A gene previously shown to be associated with cancer — called T-cell lymphoma invasion and metastasis 1 (TIAM1) — may be an effective therapeutic target in pulmonary fibrosis (PF), a new study from China suggests. The study reporting the findings, “TIAM1 inhibits lung fibroblast differentiation in pulmonary…
Have you ever been so grateful to be part of a community, either in person or online, while at the same time desperately wishing that community didn’t have to exist? That is the vortex I am stuck in regarding all of the readers who follow my columns through…
As October comes to a close and pink ribbons (the universal sign for breast cancer awareness) start to disappear, it’s hard not to feel as though some diseases take priority when it comes to awareness campaigns. If you ask someone whether or not they know the colour of breast cancer…
Children’s National Health System no longer treats just kids. Its Rare Disease Institute, launched in April 2017, has partnered with the National Organization for Rare Disorders (NORD) to become the first of many U.S. “centers of excellence” to look after patients with rare diseases, regardless of age. The effort…
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