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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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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Driven by a career in community health and a late cystic fibrosis diagnosis, I discovered my purpose through volunteering with the CF Foundation. Inspired by the power of connecting with my peers, I went on to develop my own program designed to support other adults in the CF community.
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Navigating school can be challenging when you have cystic fibrosis. The following tips can help parents and students feel prepared for a productive school year.
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When I realized how much my nutrition strategy was impacting my performance as a marathon runner, I decided to reevaluate my plan to be more intentional about how to best fuel my body before running.
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As someone who has fought to have my mental health struggles acknowledged in the past, I was heartened that the third plenary at this year’s North American Cystic Fibrosis Conference focused on the integration of mental health into CF care and research, as well as the mental health well-being of CF care teams.
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The second plenary at this year’s North American Cystic Fibrosis Conference focused on infections, how they are evolving as CF evolves, and how many people with CF still struggle with infections despite modulators. As a person with CF, the evolution of infection research has accelerated progress in my own life.
