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.Note: This column describes the author’s own experiences with Dupixent (dupilumab). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Idiopathic pulmonary fibrosis (IPF) is progressive, which means this lung disease inevitably worsens, making it increasingly difficult for patients to…
Not having control over a situation is one of the worst feelings; I wouldn’t wish it on anyone! Unfortunately, many patients living with chronic illness often feel this way, and we just have to learn to live with it. Following my 2016 diagnosis of idiopathic pulmonary fibrosis (IPF),…
I have learned a lot about idiopathic pulmonary fibrosis (IPF) over the years. Following my diagnosis in 2016, I read everything I could about this life-threatening lung disease through online forums, research articles, and various websites. My biggest takeaway was that disease progression is nonlinear and looks…
When I first began experiencing symptoms of idiopathic pulmonary fibrosis (IPF), my condition worsened quickly and kept me from doing many activities I enjoyed. And yet, it took 13 months for me to receive a diagnosis. This time frame felt like an eternity and left me and…
I wouldn’t wish the effects of a chronic cough on anyone. The cough that often accompanies idiopathic pulmonary fibrosis (IPF) is dry and persistent. It’s difficult to address and find relief, and it can be exacerbated by several things. That’s been my experience since I was diagnosed…
Writing can be therapeutic. As a therapist, I often encourage my clients to write as a way to process trauma, release emotion from their body, or organize their thoughts ahead of a difficult conversation. Whether they’re writing a letter, column, or journal entry that they plan to share or…
Achieving and maintaining a healthy weight, either through losing or sometimes gaining pounds, is an important part of our overall health and can often be accomplished through a nutritious diet and regular physical activity. However, weight maintenance becomes more complicated when you factor in a chronic illness. When I was…
As Rare Disease Day approaches on Feb. 28, I’m trying to narrow the focus of my advocacy efforts. I never imagined I’d become an advocate and grow to love so many people living with rare diseases. But that all changed in April 2016, when I was diagnosed with idiopathic…
As a young adult, I feel competent in many aspects of my life. In my career, I’m a new clinical manager in the field of psychotherapy, and I feel grateful that things are going well. Personally, I can carry out the tasks of living independently fairly well. I care for my…
Living with a chronic illness takes commitment, patience, and endurance. A lot of energy is required to manage your disease, medication schedules, procedures, and medical equipment. For me, equipment management means keeping my oxygen tanks in working order, as I’ve relied on them to breathe since I was diagnosed…
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