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 always assumed my chronic fatigue would go away after starting Trikafta and getting through the newborn stage with my twins. But, when it didn’t, I realized I needed to rethink my approach to managing my CF needs.
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When I fell into a health insurance nightmare after my lung transplant, my husband and I decided to move to his home country — England. Now, 10 years later, I feel like I float somewhere between the CF communities of the U.S. and of England
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I always assumed my chronic fatigue would go away after starting Trikafta and getting through the newborn stage with my twins. But, when it didn’t, I realized I needed to rethink my approach to managing my CF needs.
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We were heartbroken to learn our newborn needed surgery right after birth and felt unprepared for the cystic fibrosis diagnosis that soon followed. Now, six months and five surgeries later, her strength and resilience turned our fears into profound gratitude and love.
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So much of my life was spent dealing with CF in silence. It wasn’t until I heard the stories of other people with CF that I realized the weight of what I’d been carrying.
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When my son was diagnosed with cystic fibrosis, it was a shocking experience that distanced us from our family and highlighted the taboo topics our culture avoids. Thankfully, we discovered support within the CF community.
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As a person with cystic fibrosis who can’t benefit from modulators, I believe it is my responsibility to use my position on a Cystic Fibrosis Foundation research committee to advocate for others like me. I take my role as a patient representative seriously and try to keep up to date on health issues that matter most to people with CF.