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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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Mark Tremblay sitting on the steps of the courthouse in his childhood town.

BLOG

What I Learned Growing up With CF in Appalachia

I suffered a great deal of damage growing up with cystic fibrosis in a small Appalachian town — physically and emotionally. But with a lot of hard work, I have been able to overcome some of the emotional scars.

Mark-Tremblay-Headshot
Aug. 8, 2023 | 6 min read
Christa Lux smiling and grabbing her hat in front of the Grand Canyon

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My Unexpected CFTR Modulator Side Effects

Advances in cystic fibrosis care have been life-changing for me, and I’m grateful to breathe easier with a CFTR modulator. However, I began to experience new issues in the past few years, and I am left wondering if it’s a side effect of the CFTR modulator or something else.

A selfie of Christa Lux
Aug. 3, 2023 | 6 min read
Keith Connolly laying on a couch turned away from the camera

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As People With CF Live Longer, Their Needs Are Changing

My son, Keith, was diagnosed with pancreatic cancer after an initial focus on CF as the cause of his health issues. With people with CF living longer, we need more awareness of pancreatic cancer in CF individuals due to the potential increased risk.

A headshot of Teresa Connolly
Aug. 2, 2023 | 4 min read
Erik Stinnett smiling and standing in front of a waterfall with his camera

BLOG

I Try to Ignore CF But It Won’t Let Me

I have enjoyed pretty good health, so I have tried to keep my cystic fibrosis on the back burner while I pursue my passions. Sometimes, though, CF intrudes, reminding me that it’s still here.

A headshot of Erik Stinnett smiling
July 27, 2023 | 9 min read
Shellie, her husband, and her newborn baby smiling together immediately after her C-section

BLOG

Tips For Parents of a Child With CF

We couldn’t wait to take our daughter home from the hospital. But when the time finally came to bring my daughter home, I began to lose confidence in myself as I tried handling all the medications and formula. With time, I built a great routine for my family and learned some tips and tricks to share with other new parents.

A selfie of Shelby Dimel
July 20, 2023 | 6 min read
Michael Burke wearing a helmet and sunglasses, and smiling with his wife outside

BLOG

What I Learned Biking 480 Miles With CF

Michael Burke bicycled 480 miles in six days to raise money for cystic fibrosis — an unprecedented challenge that he used to think was impossible until advances in CF care helped him live boldly.

A professional headshot of Michael Burke
July 18, 2023 | 5 min read