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 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.
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I felt so alone as a kid being gay and having CF — there weren’t any role models in the 80s and 90s that I could look up to. Eventually, I found people who understood what I was going through and that helped me feel good about who I was, and who I am today.
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When I became a nurse, I was determined to be punctual and reliable, and I excelled despite my cystic fibrosis. But on the advice of a CF doctor, I changed my career trajectory, which at first caused heartbreak, but eventually led to a leadership opportunity.
