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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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Aliyah and her husband holding Starbucks cups in the car and smiling

BLOG

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
Zachary holding his daughter Ruth at their annual volleyball tournament, Volley for the Cure CF

BLOG

How I Navigated My Daughter’s CF Diagnosis

My wife and I were heartbroken when our daughter, Ruth, was diagnosed with cystic fibrosis as a newborn. But CF can’t stop us from being optimistic about what the future holds for our family.

A professional headshot of Zachary Wilson
| 5 min read
Christa Lux smiling and grabbing her hat in front of the Grand Canyon

BLOG

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
| 6 min read
Morgan sitting on a bench outside with her two twins.

BLOG

10 Unexpected Realizations After Trikafta

I have learned a lot about myself in the three years since I started Trikafta®. Even though I am healthier, I feel less connected to the cystic fibrosis community and my care team.

Morgan-Barrett-Headshot
| 5 min read
Amber smiling with her husband.

BLOG

Stable With Trikafta

On the brink of being listed for lung transplant, I started Trikafta®, which has helped stabilize my health and helped me avoid it for now, but a transplant could be in my future.

Amber Howell
| 6 min read
Tegan sitting in the waiting room of a doctor's office with her arms crossed.

BLOG

Why I Took My Daughter Off Trikafta

The excitement we experienced anticipating our daughter, Tegan, starting Trikafta® gave way to sadness and confusion as she experienced emotional side effects.

Katrina Davidson
| 5 min read