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…
Living With IPF — Charlene Marshall
Charlene Marshall 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.
Featured Post
My New Year’s wishes for the IPF community
Each new year brings an influx of marketing about resolutions, hopes, and wishes. If you’re like me, your social media feed is flooded with related ad campaigns this month. A new year often sparks…
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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…
My Healthcare Wish List: How to Improve the Patient Experience
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…
A PF Patient’s Experience: Setting Goals for Better Health
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…
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…
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…
PTSD Is Common in Chronically Ill Patients. Here’s How I Address It
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.
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…
Focusing on What Is Still Possible This Holiday Season
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…
Reflecting on Life’s Lessons During Another Special Birthday
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.
There Is Power in Your Pulmonary Fibrosis Story
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…
How Palliative Care Can Help IPF Patients and Their Loved Ones
The words “palliative care” often frighten those of us living with a life-threatening illness. This is because the term historically has been associated with end-of-life care due to its link with hospice care. But…
