Living With IPF — Charlene Marshall

Last Saturday, Bionews, the parent company of this website, celebrated Rare Disease Day with a virtual event. We planned the event for about 300 participants from the rare disease community who would get together and discuss mental health and chronic illness. They included patients, caregivers, researchers, and…

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…

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…

At a recent hospital appointment, I was asked to complete a survey about my experience. As a patient with a chronic illness, I am at the hospital a lot and am regularly asked to complete surveys. While they sometimes seem time-consuming and redundant, I know they are the hospital’s way…

I thrive in an organized and structured environment. As a young adult, I guess I’m a creature of habit and predictability, but my parents say I’ve always been this way. Last April, I wrote a column about the importance of routine and how the pandemic has disrupted our normal…

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…

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…

As a columnist for Bionews, I try to write about a variety of topics pertaining to patients living with idiopathic pulmonary fibrosis (IPF), even those that are taboo or difficult to talk about. Not only is this an expectation of columnists, it also can illuminate issues that patients may…

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…

This holiday season will be far different from previous ones. Because we are still in the midst of a global health crisis that won’t be resolved by Christmas, families must make difficult decisions about how to celebrate the holiday season this year. As a Canadian, I haven’t paid close attention…

I recently celebrated another birthday, my fourth since being diagnosed with idiopathic pulmonary fibrosis (IPF). Prior to adding “rare disease patient” to my list of personal identities, I never cared much about birthdays. Now, I embrace them and enjoy celebrating the year that has passed and looking forward to…

I have always been uplifted and inspired by stories of hope, resilience, and people overcoming challenges. I would argue that many others feel the same way, because as humans, we all crave connection with one another, and stories are powerful tools that can unite us. In our current global health…