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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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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
Devanshi laying in the grass with a tree blossoming behind her


How CF Has Impacted My Mental Health

I struggled with my health for years until I was diagnosed with CF at the age of 19. After starting treatments, my physical health improved greatly, yet the scars on my mental health remain.

Headshot of Devanshi Dubey
| 6 min read
Adriana smiling with her son.


How CF Taught Me To Appreciate Life

Having cystic fibrosis has been a double-edged sword. CF has caused suffering, but it also has given me the perspective to embrace my life.

Adriana Zamacona
| 7 min read
Vanessa smiling with her mom and dad standing outside.


How Family Relationships Have Grown Along With Day-to-Day Life

My parents made sure that I enjoyed my childhood despite my health struggles with cystic fibrosis. They focused on making sacrifices and hard decisions, such as relocating to be near my clinic, and never letting me brood over my prognosis.

Vanessa White
| 5 min read
Morgen sitting on a couch with a book open in her lap.


CF Can’t Stop My Creativity

Dance was my life, but I had to give it up when my health was in decline. I then found a new way to express my creativity through poetry.

Morgen Nudel
| 5 min read
Richard smiling with a waterfall in the background.


Not Being Prepared to Outlive Your Loved Ones

Throughout my life with cystic fibrosis, I never thought about the prospect that I would outlive my loved ones. Now that I have attended some of their funerals, the thought of my own mortality has caught up with me. 

Richard Caldwell
| 7 min read
Medora Frei doing a pulmonary function test at clinic in Minnesota.


Learning to Live With CF After a Late Diagnosis

I had never heard of cystic fibrosis until I received my diagnosis — but learning how to navigate my CF prepared me to advocate for my husband’s medical care and helped me grow as an artist.

Medora Frei
| 8 min read
David smiling outside with his wife and two children.


The Question Nobody Has Asked About My CF

I have answered questions from many about what cystic fibrosis is, but the question that I really wanted to address was: why do I believe I have CF?

David Cobb
| 5 min read