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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Caring for a child with CF can be a lot to juggle — from the many medications and daily treatments to the endless doctor's appointments. But I’ve found a system that helps me stay organized and stress-free so that I can focus on what really matters.
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With help and support from my parents, I felt empowered to make my first big decision with my cystic fibrosis care: When to remove my G-tube.
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To the moms of children with CF who feel isolated in their journey — you are not alone. This is my letter to you, from someone who understands.
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Adjusting to life after my newly adopted son’s cystic fibrosis diagnosis has been challenging at times, but I will do all I can to support and advocate for him.
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My son’s CF diagnosis created an unexpected challenge while breastfeeding him. But through practice, help from our care team, and support from the CF community, we found the perfect balance to meet his nutritional needs.
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I thought I was well-prepared to have my third baby boy, but when Oliver was diagnosed with CF, everything I knew went out the window. Though the journey has been isolating at times, my family has found our new normal with support from others in the CF community.
