Living with IPF — a column by Charlene Marshall

Charlene is a fiercely independent 30-something year-old who can’t sit still. She loves coffee, wine tasting, playing with her dog, and spending time on the beach with her family. She’s a lover of all things travel, and never passes up an opportunity for a dip in the ocean! A proud Canadian, Charlene was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2016 after 13 months of investigation into sudden shortness of breath, a chronic cough, and unusual fatigue. IPF has forced her to slow down, but she’s slowly learning the value of quality versus quantity in everything she does.

My Age Prevents Me From Participating in Clinical Trials

Next month is the five-year anniversary of when I first heard the words “idiopathic pulmonary fibrosis.” I was diagnosed by a pulmonologist at a local respiratory care center, where I’d finally been referred after 13 months of dealing with persistent shortness of breath, dry cough, and fatigue. I try…

Rare Disease Day Brings Me Hope as a PF Patient

We talk a lot about the importance of finding and maintaining hope in the rare disease community. While I agree this is important, I also want to acknowledge it isn’t always easy while living with idiopathic pulmonary fibrosis (IPF), a rare and life-threatening lung disease that eventually steals your ability…

6 Ways to Help Others Manage Pandemic Stress

Since the start of the pandemic, levels of stress, frustration, and confusion have risen to troubling levels. It seems that many of us also are experiencing more concern over new, rapidly spreading coronavirus variants. When I first heard about the variants, I broke down and cried. I felt defeated…

In Memory of Donnie Vapor: We’ll Never Forget You

It happens far too often in the pulmonary fibrosis (PF) community: the unexpected and sudden loss of a fellow patient. I’ve lost some dear friends since my idiopathic pulmonary fibrosis (IPF) diagnosis nearly five years ago, and it never gets easier. Last week, the sudden loss of Don Prager, known…

Toward a Better Understanding of the IPF Cough

While I don’t have a medical background or degree, I have learned a lot in the past few years about idiopathic pulmonary fibrosis (IPF). Much of that learning comes from other patients, either via the Pulmonary Fibrosis News Forums or in conversations at events and virtual support groups. Since…

These Resources Can Help Reduce Anxiety During the Pandemic

Many have noted that the recent holiday season was difficult due to the pandemic, as large family gatherings were discouraged. In some places, Christmas was canceled altogether. Two years ago, I wrote about the difficulty of holiday seasons for patients with idiopathic pulmonary fibrosis (IPF) due to exhaustion, and…

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