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.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…
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 the two terms were formally separated in 1990, when the World Health Organization officially recognized palliative…
Learning to use supplemental oxygen as a young adult was arguably the hardest part of my idiopathic pulmonary fibrosis (IPF) diagnosis. My life changed once I required the help of a plastic tube with two prongs up my nose to complete basic tasks that most people take for…
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