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.

As someone who does not benefit from any CFTR modulators, I only have one option for improving my lung function — transplant. But just because it’s my only choice does not mean it’s an easy one to make.


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As someone who does not benefit from any CFTR modulators, I only have one option for improving my lung function — transplant. But just because it’s my only choice does not mean it’s an easy one to make.


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When my son was diagnosed with cystic fibrosis, I was taught everything I needed to know about CF…except how to navigate the anxiety he experiences. As he’s gotten older, I’ve struggled to know how to answer his tough questions about living with this disease.


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When I first started dating my husband, who has CF, it felt like diving straight into the deep end of the CF world. I was completely overwhelmed at first, but everything changed when I discovered a supportive community of other CF spouses.


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I spent my childhood and young adulthood being told I was “too young and healthy” to be dealing with the health issues I experienced. But as an adult, I was determined to find answers, and eventually, I was diagnosed with cystic fibrosis.


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Growing up with CF, running was never an easy thing for me. Despite that, I dedicated myself to my school’s cross-country team for years and earned a spot on the varsity team. When the chance to qualify for the state finals came, I knew I couldn’t let CF stand in my way.


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The looming awareness of my own mortality from cystic fibrosis fueled years of substance misuse. But after hitting bottom and seeking help through a health program, I have been sober since August 2024, reclaimed my mental and physical health, and found strength and community in recovery.
