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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I didn't know until date four that my future wife had cystic fibrosis and was a lung transplant recipient. She was too wonderful for me to care.
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Having been diagnosed with cystic fibrosis as a baby, I grew up thinking I had an early expiration date. Once I started taking Kalydeco®, my health completely changed for the better. For the first time, I had a solid future ahead of me, and I needed to prepare for it.
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As a child, my parents instilled in me the belief that I should not let cystic fibrosis overwhelm my life. Since then, I haven't let CF interfere with my goals -- earning graduate degrees online and performing a virtual internship.
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I have learned that I can live a full life -- including marriage, cooking, and skeet shooting -- despite my rare/nonsense cystic fibrosis mutations. Even if love, hugs, and my sense of humor are all I have to give on some days, then I'm OK with that.
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After years of being treated as an oddity, I want people to acknowledge that I am a Black girl with cystic fibrosis. I want my voice to be heard.
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Although some people are very open about their cystic fibrosis, I prefer to keep my diagnosis to a small group of family and friends -- and that is OK. There is more than one correct way to live with CF.
