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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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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

BLOG

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.

BLOG

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