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CF Community Blog

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.

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Zanny flexing her bicep which has a PICC line in it


Living in the In-Between

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.

A professional headshot of Zanny Steffgen
| 6 min read
A selfie of Sheila Tines wearing supplemental oxygen


Finding Freedom Through Online Gaming

Living with an illness like advanced lung disease can be incredibly isolating and limiting. But I’ve found a way to connect with others and make my own adventures through online gaming.

A headshot of Sheila Tines
| 4 min read
Meagan and her husband and dog on a hike standing near a waterfall


Finding Normalcy After Transplant

When I lived with advanced lung disease, I never expected to feel good again. But after receiving a double-lung transplant, my whole world changed.

| 5 min read
Madison smiling next her husband, who is holding their daughter Karleigh


How One Diagnosis Can Change Everything

When my daughter was born, her newborn screening indicated that it was unlikely she had CF. But after months of mysterious symptoms, a sweat test confirmed her diagnosis. This unlocked answers not only for my daughter, but for our entire family.

Madison Patterson
| 7 min read
Inka standing at the finish line of her marathon with her arms out wide


Navigating the Emotions of Chronic Lung Rejection

Being diagnosed with chronic lung rejection was devastating. However, maintaining hope and a positive mindset helped me look forward to the future and smile again.

Headshot of Inka Nisinbaum
| 7 min read
Jaclyn smiling with her husband and her son, Major, in front of a football field


Deciding When to Remove My G-Tube as A Kid With CF

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.  

Major Strube wearing a football jersey
| 6 min read