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.A study published early last year revealed that patients living with a rare disease have a greater risk of developing anxiety and other mental health issues compared with people with more common diseases, The Lund Report noted. While more than 6,000 rare diseases have been identified around the…
Outpatient pulmonology appointments are common for people with idiopathic pulmonary fibrosis (IPF). The frequency of these appointments varies, depending on how the disease progresses, but spending a day at the hospital for various tests is familiar to many of us. Since my IPF diagnosis in 2016, the number of these…
March 11 was the one-year anniversary of the World Health Organization declaring COVID-19 a pandemic. Since then, I’ve been reflecting. I’ve learned a lot this year about myself and others. The hardships we’ve all faced have shown many of us how resilient and adaptable we can be. Many of…
After being diagnosed with a life-threatening lung disease like idiopathic pulmonary fibrosis (IPF), many patients reluctantly accept that their life span will be shortened. Even if we’re lucky enough to receive a lung transplant, it isn’t a cure, and it essentially swaps the management of one chronic illness for another.
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…
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…
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