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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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A selfie of Marieliz and her husband


Learning How to Live on a Fixed Income
May 29, 2024 | 6 min read

It was hard for me to accept that having CF limited my finances as well as my body. But doing so helped me learn how to live within a fixed income and ask for help when I needed it.

A selfie of Marieliz and her husband
Daniela Cortez taking a selfie in scrubs in the mirror of a bathroom


My Long Journey to a CF Diagnosis
May 21, 2024 | 10 min read

I struggled with health issues my whole life — including a liver transplant — but nobody could explain what was wrong with me until I was diagnosed with CF as an adult. Now I finally have an answer, but I’m still figuring out how to feel about it.

A selfie of Daniela Cortez
Stephanie and her daughter wearing matching "Gobble Jog" t-shirts


Finding Stability in the Unknown
May 15, 2024 | 6 min read

It took years until a doctor helped us get to the bottom of my daughter’s chronic respiratory issues; that’s when she was diagnosed with a CFTR-related disorder. While this wasn’t the conclusive answer we were hoping for, it opened the door for support we’d never had before. 

A headshot of Stephanie Watts
Jennifer Taylor-Cousar smiling in front of a vista in Colorado


Advocating for Health Equity in Cystic Fibrosis
May 14, 2024 | 6 min read

Dr. Jennifer Taylor-Cousar is passionate about bringing attention to health inequities in cystic fibrosis. By partnering with the CF Foundation, other organizations, and the CF community, she believes we can work together to create equitable health outcomes for everyone with CF. 

Morgan smiling with her twin toddler sons


Giving Myself Permission to Forget
May 2, 2024 | 5 min read

I was recently reminded of what my life used to be like before Trikafta® — and I immediately felt guilty for forgetting. But maybe it’s OK to let go of the past and embrace a future of hope.

Marlenny and her son smiling in front of bright pink flowers


Organization Tips for Parents of Children With CF
April 30, 2024 | 5 min read

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.

A professional headshot of Marlenny