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.
I began fundraising and raising CF awareness soon after my son, Aidan, was diagnosed as a baby. After years of successful fundraiser walks, Aidan asked me to stop — opening my eyes to the difference between being a mom of someone with CF and being the person who is living with CF.
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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.
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The excitement we experienced anticipating our daughter, Tegan, starting Trikafta® gave way to sadness and confusion as she experienced emotional side effects.
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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.
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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.
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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.
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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.
