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.Throughout their lives, many people experience an array of ups and downs. Days, months, or even years can be plagued with challenges that seem unfair. Conversely, people also can experience prolonged periods when things go well. Rare disease patients who frequently experience ups and downs caused by their illness know…
I love the memories feature offered on various social media platforms. With the click of a button, you can revisit what you were doing or posting about on the same day in previous years. I recently read an old post on one of my social media pages that reminded…
Following my idiopathic pulmonary fibrosis (IPF) diagnosis in 2016, I had many fears. As an avid traveler, my No. 1 fear was being put on supplemental oxygen and losing the ability to fly. I also feared that using oxygen would prevent me from partaking in many of the outdoor…
According to the Canadian Lung Association, idiopathic pulmonary fibrosis (IPF) is difficult to diagnose because its symptoms mimic other common respiratory conditions. I have spoken with many IPF patients who can attest to this. They describe their diagnostic journey as long, complicated, and frustrating. The process of being diagnosed…
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, rescue inhalers aren’t always effective in managing or improving pulmonary fibrosis…
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. Two years ago, I published a column about the importance for…
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 through the stories of those who came before us. As a…
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 was diagnosed with idiopathic pulmonary fibrosis (IPF) at the age of…
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 2019, I wrote about household hazards that patients with PF…
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…
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