patientMpower, a U.K. digitial healthcare and advocacy company, joined others in voicing disappointment with the recent decision of a British advisory board to restrict the use of Esbriet (pirfenidone) to patients with moderate-to-severe idiopathic pulmonary fibrosis (IPF). NICE’s final recommendations for Esbriet (marketed by Genentech) and its…
Using supplemental oxygen is a mixed bag. It is wonderful because it gives us the oxygen we need to keep our body healthy and to stay alive. It is hard due to many reasons I shared in a previous column, including dealing with the tubing. I’ve discovered…
Pulmonary fibrosis patients have a new tool for learning about clinical trials of potential treatments. The Clinical Trial Finder is an online platform that the Pulmonary Fibrosis Foundation developed. It offers information on the more than 100 research opportunities listed on the National Institutes of Health’s ClinicalTrials.gov website. An overarching goal…
At some point, everyone experiences a level of vulnerability. Perhaps it is joining a new sports team as a child where you fear your skills may not be comparable to other members of the team. Maybe it is on a first date where there is a risk that…
Swiss researchers have identified a potential blood biomarker for idiopathic pulmonary fibrosis — a precursor to the signaling molecule lysophosphatidic acid. Their study, ”Serum metabolic profiling identified a distinct metabolic signature in patients with idiopathic pulmonary fibrosis – a potential biomarker role for LysoPC,” was published in the journal…
David Curtis Glebe, a retired 64-year-old public prosecutor now living in Millsboro, Delaware, knows he’s lucky to be alive. In mid-2013, while in Arizona, Glebe was diagnosed with pancreatic neuroendocrine cancer (PNET) — the same disease that killed Apple’s founder and CEO Steve Jobs. After three years of progress…
Researchers at Vanderbilt University Medical Center plan a Phase 1 clinical trial to evaluate the virus medication Valcyte’s ability to prevent lung tissue scarring in idiopathic pulmonary fibrosis patients. The trial (NCT02871401) will cover 30 IPF patients who have had cytomegalovirus infections. This type of herpes virus causes mononucleosis.
It’s hard to believe that the first month of 2018 has already come to an end. It’s true what they say: The older you get, the faster life seems to speed by. I can certainly attest to that for this month, as it feels like the new year…
When people refer to a “support network” that surrounds someone with a life-threatening illness, you usually think of close friends or family members. In the past, you would rarely think of complete strangers — however, this has certainly changed in recent years. The benefit of belonging to an online support…
Before you can access the groups and discussions in our new Pulmonary Fibrosis News forums, you’ll need to sign up and create a profile. To do this, go to the Forums page and click register; you’ll then be prompted to enter your name, age and whether you are a…
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