Blog

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.

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.

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.

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.

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.

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

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.

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.

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.

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.

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.

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.