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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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.
Feb. 5, 2019
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7 min read
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When I'm getting ready for clinic days, I fight the stress and anxiety with extra treatments, time with my dogs, and a semi-public singing of one of my favorite 80s songs. What do you do before your clinic appointments?
Feb. 1, 2019
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3 min read
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Although I asked for help to manage the physical aspects of my disease, it took a long time for me to feel comfortable asking for support for the emotional impact of cystic fibrosis.
Dec. 17, 2018
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5 min read
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I am grateful that I can run and work out at the gym even though I have cystic fibrosis. Still, I can't help feeling guilty that others with this disease are struggling, and it's hard to shake the feeling that one day it could be me.
Dec. 11, 2018
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3 min read
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When you are waiting to be listed for a lung transplant, it can feel like you're in limbo. Through the many frustrations and uncertainties, I've learned that it's important to get support -- not only for my physical health, but for my emotional health as well.
Dec. 6, 2018
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3 min read
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My pulmonary function test results are important in telling me about my cystic fibrosis, but it's only one measure of my overall health.
Nov. 6, 2018
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3 min read