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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Our dream for our daughter, Eden, is the same one that parents have for their kids who don't have cystic fibrosis. We want her to be happy and realize her true potential.
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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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With a late diagnosis, I had every reason to feel hopeless and alone, but getting involved and connecting to others truly gives me hope for my future.
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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.
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My husband and I spent our first weekend as parents contemplating the news that our new son had cystic fibrosis. Although we handled it in very different ways, we were ultimately able to overcome the initial shock, with an entire team to help us along the way.
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My atypical cystic fibrosis led doctors to believe that my health issues had another cause. Members of the CF community welcomed me as one of their own and helped me to find the answer.
