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.
Frequent appointments and testing are part of life with idiopathic pulmonary fibrosis (IPF). I’ve been living with IPF for eight years now, but the number of those appointments and tests can still overwhelm me, especially as I’m…
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Managing symptoms is an ongoing challenge for chronically ill patients. Whether they’re caused by an exacerbation, disease progression, or environmental factors, it’s often difficult for patients to get quick relief, including from respiratory symptoms. Despite their name,…
While you can’t predict an emergency, it helps to be prepared for one. Most young adults haven’t had to think about whom to notify during a medical emergency, but I have as a result of my idiopathic pulmonary fibrosis.
Stories have been a catalyst for conversation for centuries. Generations of families are often weaved together by the narrative of a loved one’s past, and by the stories that have shaped our evolution. There is so much to learn…
If I could give strangers one gift, it would be that they never take their healthy lungs for granted. I’ve longed for a life with fully functioning lungs for 1,854 consecutive days. That’s how long it’s been since I…
In a story about living with idiopathic pulmonary fibrosis (IPF), mold would be an antagonist. An abundance of literature outlines the dangers to the lungs of persistent mold exposure, including lung cancer, aspergillosis, and pulmonary fibrosis. In September…
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…
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…
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…
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…
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…
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…
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),…
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