The CF Community Blog is written by the community, for the community. It's about sharing our experiences, reflections, and perspectives — the good days, the bad days, and all the tough and wonderful things in between. With topics ranging from emotional health to treatments, the blog is a platform to share your unique story.
Now that I am feeling healthy on Trikafta®, I no longer feel special for thriving despite the challenges of cystic fibrosis. I don’t feel like I belong in the CF community anymore, and I miss that sense of camaraderie that comes from a shared struggle.
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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.
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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 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.
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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.
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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.
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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.
