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.
Having an atypical presentation of CF means I stand somewhere between the CF world and the rest of the world — and that makes me feel like I belong in neither.
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Having been diagnosed with cystic fibrosis as a baby, I grew up thinking I had an early expiration date. Once I started taking Kalydeco®, my health completely changed for the better. For the first time, I had a solid future ahead of me, and I needed to prepare for it.
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As I listened to the second plenary for this year's North American Cystic Fibrosis Conference, I couldn't help but think of my own experience with CFTR modulators and the positive effects that they have had on my health.
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After years of hospitalizations and low lung function, I am now feeling healthy on Trikafta® -- so much so that I finally feel like I can reset the clock and start living my life.
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Does Trikafta® increase the chance of pregnancy for women with cystic fibrosis? Can men regain their fertility on modulators? I recently had a candid chat with the chair of the Women's Health Research Working Group to find out the answers to these and other questions about reproductive health.
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As some people's pandemic fears subside and businesses start to reopen in parts of the U.S., people with cystic fibrosis like me are maintaining their social distance. We still need to be extra cautious because of the threat COVID-19 poses to people with an underlying condition.
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I have seen tremendous health gains since starting Trikafta. But control of my cystic fibrosis-related diabetes has been elusive.
