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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Finding out that I couldn't swim because of the risk of further infections crushed me. It was hard to find a replacement activity that was fulfilling -- until I discovered the thrill of dirt bike racing.
Sept. 26, 2019
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5 min read
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I've found it hard to cope with CF as I have gotten sicker, and loneliness comes about in both physical and emotional ways. Even though the people in my life may not know exactly what I'm going through, I'm trying to let them in on what I'm feeling.
Sept. 24, 2019
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6 min read
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Cystic fibrosis is unpredictable and I've found that some of the complications aren't as progressive as the disease.
Sept. 10, 2019
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5 min read
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After my son was diagnosed with cystic fibrosis, I was stunned by some of the insensitive questions and comments I received from friends and family. Over time, I learned that their unsolicited feedback provided teachable moments that I hope to pass along to other families.
Sept. 3, 2019
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5 min read
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As the parents of two children with cystic fibrosis, we survived every parent's nightmare -- the loss of a child. Alyssa, our 29-year-old daughter, died in March 2018 after two failed double-lung transplants. We don't question why, because there is no acceptable answer. We just soldier on and fight for our son.
July 16, 2019
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5 min read
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What I thought would be a fun trip to the nail salon with my mom let me know I had a bigger problem with anxiety than I thought.
July 11, 2019
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4 min read