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.
People like me are living longer — median survival for someone with cystic fibrosis is now 56 thanks to research and care. But as I grow older, my health is getting more complicated and I'll need my care to keep up.
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My partner, Jan, was a CF fighter for 50 years. She lived an amazing life and celebrated her lung transplant to the fullest. She passed away a few months ago and I'm honored to keep her fight against CF going strong.
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Losing my brother when I was just a teenager left me feeling isolated in my grief. There was no internet or social media in the 1980s to connect with other people with CF. Therapy and time eventually allowed me to cope with his loss, open up to family and friends, and invite them to share in my memories.
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Although many of us were never able to meet Claire Wineland in person as fellow CF patients, her legacy and approach to the disease continue to have a major impact on the CF community.
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Cystic fibrosis took the lives of my sister and brother. I use every opportunity to share their stories and help keep their memories alive.
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My mother's approach to her cystic fibrosis was matter-of-fact, allowing her personality to take center stage.
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Shortly after my fiancée, Ashley, told me about her cystic fibrosis, we were engaged. Months later, she passed away, leaving me to figure out what I could have done differently and how to cope.
