IPF Leads to Decades of Advocacy
Teresa Barnes calls herself an accidental advocate. She was preparing herself for a career in journalism and the medical device industry when her dad was diagnosed with Idiopathic Pulmonary Fibrosis (IPF) in her senior year of college. Within 11 years between 1996 and...
Deadly Lung Diseases are Hitting Families Hard Across Generations
Jan Hale first heard of Idiopathic Pulmonary Fibrosis when her mother was diagnosed with it in 2004. In less than a year her mom died at the age of 78. A decade later, Jan’s older brother got the same diagnosis and within three years he needed a lung transplant. Eight...
Study Finds 49% Mortality Rate in ILD Patients with COVID-19
An international multicenter study was conducted to assess the outcomes in patients with a prior diagnosis of Interstitial Lung Disease (ILD) admitted to a hospital for COVID-19 vs. patients without ILD. Idiopathic pulmonary fibrosis (IPF) is the most severe and most...
Disease-Linked Gut Microbiome Varies With Age
Image credit: Darryl Leja, NHGRI (CC BY 2.0) The human body is an ecosystem made up of both human cells and trillions of microbes, and the largest microbial community is in the gut. This community of gut microbes helps harvest nutrients from our food, modulates our...
Could an extract from Green Tea reverse fibrosis?
A UC-San Francisco pilot study associated a reversal in fibrosis with an over the counter supplement, epigallocatechin gallate (EGCG). This plant-based compound can be found in green tea. “In sequential order, half the patients were given capsules of EGCG (Teavigo) at...
Group crowdfunds a clinical trial to help IPF Patients
Published by TuftsNow and written by Genevieve Rajewski. Shared with permission. No time to lose-Teresa Barnes, an IPF advocate and volunteer, facilitates the acceleration of an IPF cure. "I have a nine-year-old daughter, and her risk is also fifty/fifty," she said....
Living with IPF – Bill Vick’s Lessons Learned
Nine years ago, Bill Vick was diagnosed with Idiopathic Pulmonary Fibrosis. With no available cure and few treatment options available, Bill embarked on his journey with IPF with the idea that the more you learn, the more you’re in control. He founded PF Warriors, a...
Vitamin D – Why You are Probably NOT Getting Enough
WHAT VITAMIN DO WE need in amounts up to 25 times higher than the government recommends for us to be healthy? What vitamin deficiency affects over half of the population, is almost never diagnosed, and has been linked to many cancers, high blood pressure, heart...
Listen: My Story About Living With IPF
In honor of Pulmonary Fibrosis Awareness Month, I’d like to tell you, in my own voice, what it’s been like living with a terminal lung disease as a young woman. Naturally, I felt very alone, unsettled, and isolated from my peers when I was diagnosed. Sharing about my...