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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Despite my cystic fibrosis, my relationship with my daughter continues to grow stronger each time we are together. She doesn't care about what I can or can't do physically. She just loves me unconditionally.
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I have faced a lot of ignorance about my cystic fibrosis -- even from people whom I thought were my friends. I have learned not to take it personally. I just educate who I can and move on.
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This year, I'm planning a big, beautiful queer wedding with my fiancée, Ali. Even though I felt conflicted about bringing Ali into a life with CF, she stayed by my side through some of the hardest challenges I've ever faced.
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It might seem strange but for someone with cystic fibrosis, something as simple as a mammogram can spark joy. It means that I have lived long enough to have reach this preventive care milestone, and that is something to celebrate.
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For the most part, I have been fortunate with my cystic fibrosis in that I never needed to go into the hospital. But, that all changed in 2008. Fortunately, I was able to start using Kalydeco. My health improved, and I was able to continue my career in radio and TV.
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At 86, Marlene Pryson may be one of the oldest individuals living with cystic fibrosis. During her long life, she has dedicated many years of service to helping CF families as a CF clinic coordinator and family liaison.
