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.
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.
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I resisted being listed for a lung transplant; but now, almost six years later I’m thankful — especially to my donor — for my new life.
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The journey my husband and I traveled while trying to conceive our son was stressful but ultimately fruitful. Here’s what I learned during that process.
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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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I’ve had to make many changes in response to the COVID-19 pandemic to protect my health. Not all the changes were welcome, but now that I’ve adjusted, I’m enjoying my new normal.
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There are many ways you can support a family with a child or children with cystic fibrosis. Educating yourself about the disease and its treatments and offering to help without being asked are some of the best ways you can show you care.
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A life with cystic fibrosis taught me how to be sick. After a lung transplant, I had to learn how to be well.
