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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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Daniela Cortez taking a selfie in scrubs in the mirror of a bathroom


My Long Journey to a CF Diagnosis

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
May 21, 2024 | 10 min read
Stephanie and her daughter wearing matching "Gobble Jog" t-shirts


Finding Stability in the Unknown

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
May 15, 2024 | 6 min read
Jennifer Taylor-Cousar smiling in front of a vista in Colorado


Advocating for Health Equity in Cystic Fibrosis

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. 

May 14, 2024 | 6 min read
Morgan smiling with her twin toddler sons


Giving Myself Permission to Forget

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.

May 2, 2024 | 5 min read
Marlenny and her son smiling in front of bright pink flowers


Organization Tips for Parents of Children With CF

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
April 30, 2024 | 5 min read
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
April 18, 2024 | 6 min read