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.
Having an atypical presentation of CF means I stand somewhere between the CF world and the rest of the world — and that makes me feel like I belong in neither.
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Having cystic fibrosis means that hospitalizations are nothing new to me. But as I get older, I am much more aware of all the events I'm missing out on — birthdays, concerts, and school field trips. So this fall, I decided to take my life back from cystic fibrosis.
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Cystic fibrosis defined my identity for many years until I participated in clinical trials for Trikafta®. As my health improved, I struggled to figure out what this meant for my sense of self. This experience motivated me to help other young adults with CF navigate the many changes that modulators can bring.
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Growing up, I struggled with wanting to feel “normal” because I was bullied and judged by my peers for my cystic fibrosis. But then I found genuine friendship in college and learned what it means to feel truly supported.
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As a personal trainer, I used to feel insecure about the physical effects of CF on my body. But over time, I’ve learned that my strength is defined by so much more than my appearance.
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I suffered a great deal of damage growing up with cystic fibrosis in a small Appalachian town — physically and emotionally. But with a lot of hard work, I have been able to overcome some of the emotional scars.
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I struggled with my health for years until I was diagnosed with CF at the age of 19. After starting treatments, my physical health improved greatly, yet the scars on my mental health remain.
