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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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Lydia smiling with her dog, Carl, in the kitchen


Learning to Cope While Growing Up With CF

Growing up with CF was hard, but my parents helped me learn how to cope by both encouraging me to fight and allowing me space to complain.

| 4 min read
Allissa smiling and posing in her pageant crown and sash, holding a bouquet of flowers


CF Can’t Stop Me From Doing What I Love

Having cystic fibrosis means that hospitalizations are nothing new to me. But as I get older, I am much more aware of all the events I'm missing out on — birthdays, concerts, and school field trips. So this fall, I decided to take my life back from cystic fibrosis.

Allissa smiling on the beach while holding an iguana with a lizard on her head
| 3 min read
Aliyah and her husband holding Starbucks cups in the car and smiling


Finding Myself After Starting Trikafta

Cystic fibrosis defined my identity for many years until I participated in clinical trials for Trikafta®. As my health improved, I struggled to figure out what this meant for my sense of self. This experience motivated me to help other young adults with CF navigate the many changes that modulators can bring.

A selfie of Aliyah Novelli
| 6 min read
Kelcee posing and smiling in her cheerleading uniform


Dealing With Judgment

Growing up, I struggled with wanting to feel “normal” because I was bullied and judged by my peers for my cystic fibrosis. But then I found genuine friendship in college and learned what it means to feel truly supported. 

A headshot of Kelcee Braden in her cheerleading uniform
| 7 min read
Rachel Leah performing a one-arm dumbbell row in the gym


How I Learned to Be Proud of My Body With CF

As a personal trainer, I used to feel insecure about the physical effects of CF on my body. But over time, I’ve learned that my strength is defined by so much more than my appearance.

A selfie of Rachel Leah
| 6 min read
Mark Tremblay sitting on the steps of the courthouse in his childhood town.


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.

| 6 min read