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…
Rare Disease Groups, Patients Differ on ‘Right to Try’ Bill Before US Congress
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…
How Online Communities Can Support Patients With IPF
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…
Actelion Pharmaceuticals’ Tracleer (bosentan) increased the overall survival and reduced the hospitalizations of patients with pulmonary hypertension stemming from idiopathic pulmonary fibrosis, or IPF-PH, a Japanese clinical trial shows. Researchers published their preliminary findings on the ongoing long-term trial in the journal BMC Pulmonary Medicine. The title of the article…
Pulmonary Fibrosis Stories: Ricky Miller
https://vimeo.com/162782590 In this photograph montage from Jason T. Beck called Celebrating Ricky Miller, we get a glimpse of the life of Ricky from Akron, Ohio, who battled idiopathic pulmonary fibrosis, a chronic condition that causes scarring in the lung tissue. MORE: Why we shouldn’t stop raising awareness…
Last week, I had my first appointment with the lung transplant team at the University of California, San Francisco (UCSF). Last month, I wrote a column about the team’s decision to meet with me. This first appointment went very well, better than expected! Praise God!…
Phelix Therapeutics has received a $201,665 National Institutes of Health (NIH) grant to continue studying Calpain-based treatments for tissue-scarring diseases like idiopathic pulmonary fibrosis and the liver condition nonalcoholic steatohepatitis. Doctors need better treatments for scarring — or fibrosis — diseases, Phelix said. Current therapies address some of the inflammation that occurs in these…
With increasing interest in natural remedies for the management of disease symptoms, discussion about the uses of essential oils flourishes. Advocates for oil companies, such as dōTERRA or Young Living, will tell you that there are “unlimited” benefits and uses for these oils to help you live…
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