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.
For those of us who can’t take modulators, it can sometimes feel like you’ve been left behind. But I have found hope and motivation by participating in clinical trials.
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Living with an illness like advanced lung disease can be incredibly isolating and limiting. But I’ve found a way to connect with others and make my own adventures through online gaming.
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When I lived with advanced lung disease, I never expected to feel good again. But after receiving a double-lung transplant, my whole world changed.
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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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Being diagnosed with chronic lung rejection was devastating. However, maintaining hope and a positive mindset helped me look forward to the future and smile again.
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With help and support from my parents, I felt empowered to make my first big decision with my cystic fibrosis care: When to remove my G-tube.
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As cystic fibrosis damaged my lungs, I did all I could to make it to my university graduation before I underwent lung transplant.