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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When my daughter was born, her newborn screening indicated that it was unlikely she had CF. But after months of mysterious symptoms, a sweat test confirmed her diagnosis. This unlocked answers not only for my daughter, but for our entire family.
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I was recently diagnosed with cystic fibrosis at age 67. Although I love my CF care team, I think it will be important for them to understand age-related care in addition to CF care — especially as the CF population ages.
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After managing various chronic symptoms my whole life, I was finally diagnosed with CF as an adult. As I struggled to cope with the news, my community rallied around me and taught me what true support looks like.
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My wife and I were heartbroken when our daughter, Ruth, was diagnosed with cystic fibrosis as a newborn. But CF can’t stop us from being optimistic about what the future holds for our family.
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My life was turned upside down when I was diagnosed with cystic fibrosis caused by a rare mutation, but my passion for figure skating has helped me stay healthy and happy through it all.
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I was recently diagnosed at 69 years old. Although it helped explain why I had been sick so often and gave me a new community, I can’t help but think about the lost time when my disease went untreated.