We’re highlighting six creators who are helping raise awareness of cystic fibrosis. By sharing parts of their life with CF on paper or on screen, they’re voicing the variety of ways that people experience the disease.
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I was diagnosed late with cystic fibrosis. When I found out I had bronchiectasis on top of that, I was crushed. However, nine years later, my health is as good as it can be, and I’ve learned the value of fighting back.
I had no idea what cystic fibrosis was — or that I had it — until six months of pancreatitis led to a diagnosis.
Throughout my life with cystic fibrosis, I have marked many milestones. My most important one yet is holding a full-time job while managing my health.
My experience traveling with cystic fibrosis has taught me that a chronic illness should never slow you down. It may require extra planning and packing, but it’s worth it and definitely doable.
After decades of identifying myself as Monique, “the girl with cystic fibrosis,” I didn’t know who I was anymore after Trikafta changed my health for the better.
I didn’t realize how important my cystic fibrosis care team was — or how they had my back — until I stayed in a hospital where the staff had little knowledge of the needs of people with cystic fibrosis.
I was determined to make my dream of becoming a mother a reality despite the potential risks that pregnancy can cause for people living with CF. It certainly wasn’t easy, but the challenges of pregnancy and CF were rewarding in the end because I now have two wonderful girls who call me mom.
Accepting my son’s cystic fibrosis diagnosis has been a year-long journey for our family. I learned there is more to motherhood with a chronically ill child than meets the eye.