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.
Dr. Jennifer Taylor-Cousar is passionate about bringing attention to health inequities in cystic fibrosis. By partnering with the CF Foundation, other organizations, and the CF community, she believes we can work together to create equitable health outcomes for everyone with CF.
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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.