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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My husband and I had always said that we would either have no kids, or we would have two. But, when our first child was diagnosed with cystic fibrosis, we were suddenly faced with a difficult decision.
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As a mom to two children with cystic fibrosis, I know what works best for them and can identify the subtle signs of how they are feeling before anyone else. This makes me a valuable member of our CF care team.
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If you want your kids to eat all of their dessert instead of all their vegetables and have a kitchen refrigerator that looks like a pharmacy, then this list is for you.
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When my two boys with cystic fibrosis ask me about death, I don't see it as something to be feared or ignored. Rather, I view it as an opportunity to share information about CF and the truths of life in an appropriate and honest way.
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Although not part of my son's “official” care team, our local pharmacist plays a key role in his cystic fibrosis care.
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In the two and a half years since our son's cystic fibrosis diagnosis, we've learned how to build his care into our daily routine and manage his disease to the point that it's almost become -- dare I say -- normal. Here is a list of the top 10 things that are stressing me out more than my son's CF right now.