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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

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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

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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
| 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.

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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

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Vertex Copay Assistance: Tips from a CF Pharmacist

If you receive financial assistance from Vertex GPS™ for a modulator therapy (e.g., Trikafta®, Symdeko®, Orkambi®, or Kalydeco®), you may be impacted by changes Vertex has made to its copay assistance program. The following tips can help you understand how you may be impacted and what next steps may be available to you.

Head shot of pharmacist.
| 6 min read
Monique smiling with her mom hugging her and leaning on her shoulder.

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Relearning Who I Am After Trikafta

After decades of identifying myself as Monique, “the girl with cystic fibrosis,” I didn’t know who I was anymore after Trikafta changed my health for the better.

Monique Wiegand
| 6 min read
Amanda laying down on a hospital bed smiling.

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What I Wish I Would Have Known Before Trikafta

Although I had been told that my coughing would stop, I wish I had known more about the transformative change that Trikafta® would have on my life. It has almost made me wistful for the time when I was sick, back when I was more in tune with what my body was experiencing.

Amanda Healy headshot
| 6 min read
Morgan Barrett outside smiling in a selfie photo.

BLOG

Losing My CF Identity

Now that I am feeling healthy on Trikafta®, I no longer feel special for thriving despite the challenges of cystic fibrosis. I don’t feel like I belong in the CF community anymore, and I miss that sense of camaraderie that comes from a shared struggle.

Morgan-Barrett-Headshot
| 7 min read
Elizabeth Tressel Family Outside

BLOG

Because of Trikafta, I Am Training for My First Marathon

After starting Trikafta, I decided to try running again, and I grew to love it. Because of COVID, I had to conduct my own races in 2020, but now I have joined a running group and am preparing to run my first marathon at the end of September.

Elizabeth Tressel Headshot
| 6 min read
Breck-Gamel-Trikafta-Smiling-Featured-Rectangle

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How I’m Preparing for Trikafta’s Expected Approval for Children Ages 6-11

I am anxiously awaiting the U.S. Food and Drug Administration's approval of Trikafta for children with cystic fibrosis ages 6 to 11. To prepare, I'm doing everything I can to ensure my 11-year-old son can take advantage of the medication as soon as it is approved.

Breck-Gamel-Headshot
| 4 min read