30 Days of PF: Staying Active While Living with IPF

30 Days of PF: Staying Active While Living with IPF

Photo courtesy of Malcolm Mann Day 16 of 30 This is Malcolm Mann’s story: My first inkling that my lungs were under stress was around the year 2000, when I developed a cough while exercising. In those distant days, I was a 50-year-old, slow-ish triathlete, and I…

Why September Is Hard for Me as an IPF Patient

As a patient living with a chronic illness, I’ve become comfortable with people using clichés to try to comfort me. People naturally want to relate to others, but it’s often hard for someone who’s healthy to understand the experiences of a young adult who requires oxygen to breathe. One cliché…

30 Days of PF: I’ve Been Given a Second Chance at Life

Photo courtesy of Curt Strickland Day 15 of 30 This is Curt Strickland’s story: I had a double lung transplant 18 months ago, and I am doing very well. Given my good fortune, I wanted to share what I believed helped in both my recovery and the actual transplant…

New Institute Aims to Leave No Rare Disease Patient Behind

A newly launched non-profit institute is seeking to advance research, and the development of new therapies, for people with rare diseases — a patient community with some of the largest therapeutic needs, but one that is often left behind. Named the Institute for Life Changing Medicines, the project was…

My Theory on How I Developed IPF

When I was diagnosed with idiopathic pulmonary fibrosis with dendriform ossification in 2014, it was the second time I had a medical condition with an unknown cause. Three years earlier, I developed blood clots and had two pulmonary embolisms. Again, a reason for them couldn’t be determined. These unknown…

30 Days of PF: Finding Peace and Relishing Life

Photo courtesy of Jerry Barnum Day 13 of 30 This is Jerry Barnum’s story: My name is Jerry Barnum. I am 70 years old and live in Minnesota. In 2017, I was diagnosed with interstitial pulmonary fibrosis with autoimmune features. As one who learned I have a terminal…