I have grown accustomed to using supplemental oxygen and often overlook people who stare at me, wondering about the young adult who seemingly cannot breathe. While I don’t seem to notice when people stare, it was apparent to friends with me last week. Multiple people asked me,…
What Do You Say? Responding to Awkward Statements and Stares
When it comes to understanding pulmonary fibrosis, asking your healthcare providers any questions you may have should always be your first option. Unlike an unknown source on the Internet or that friend of a friend who suffers from the same condition, your healthcare providers are trained and studied for years to be able to answer your questions, especially…
Researchers from two Southern U.S. universities and a federal healthcare agency have begun a study of pulmonary fibrosis in people with the rare disease Hermansky-Pudlak syndrome (HPS). The objective of the observational clinical trial is to learn why those with HPS develop lung fibrosis, or tissue scarring. The team from …
Pulmonary fibrosis patients have lots of unique medical needs, especially concerning obtaining medication and supplemental oxygen. A few weeks ago, I wrote two columns about my fight to get liquid oxygen as well as tips to help readers obtain…
Interstitial lung disease (ILD) is an umbrella term given to a range of chronic lung diseases which all involve the interstitium. According to WebMD, the interstitium is part of the lungs’ anatomy. It’s a lace-like tissue spread throughout the lungs that supports the air sacs (alveoli) and allows…
Since 2014, the Pulmonary Fibrosis Foundation has been working with the medical community to create the PFF Care Center Network. The network is a place where pulmonary fibrosis (PF) patients can go to find medical professionals experienced in treating people with the condition and who have the…
I have read many articles on young adults living with a chronic illness since being diagnosed with idiopathic pulmonary fibrosis (IPF). Some I can relate to, while others don’t resonate with me at all. The articles I find most beneficial are ones that suggest tangible tools to help people cope…
Pulmonary fibrosis is a progressive lung disease caused by scarred tissue in the lungs. The thickening of this tissue makes it difficult to transport oxygen from the lungs, resulting in shortness of breath. Below is a list of informative books about the disease, compiled with help from alibris and Friesen…
A University of Southern California researcher has received a $6.9 million U.S. government grant to continue her work on lung cell regeneration as a way of treating such diseases as pulmonary fibrosis and chronic obstructive pulmonary disease. Dr. Zea Borok of the university’s Keck School of Medicine received the seven-year grant under the National Heart, Lung, and…
While living with a chronic illness can be challenging, there are ways that you can make life easier and live a happy and fulfilling life. Establishing good habits and routines takes time, but as Gunnar Esiason points out in his blog Own It, there are some “common sense…
