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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Teaching My Kids Hard Truths About CF
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I depend on the medical expertise of my cystic fibrosis care team to keep my child healthy. I depend on the complementary expertise of other moms of kids with CF to help me stay emotionally healthy.
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When my daughter was diagnosed with cystic fibrosis as a newborn, I was shattered. But then, I decided I would raise her to know that CF was something she had, not who she was.
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Having enjoyed good health most of my life, I gave little thought to cross-infection risk -- even though others in my family have cystic fibrosis. The birth of my son has me rethinking that.
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After my son was diagnosed with cystic fibrosis, I knew that I wanted to connect with other CF families. Fortunately, I've been able to find a group of moms who understand what my life is like and help me cope.
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Having lived with cystic fibrosis for 47 years, I want to pay it forward and share the life lessons I've learned with new parents of children with CF.
