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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I have seen tremendous health gains since starting Trikafta. But control of my cystic fibrosis-related diabetes has been elusive.
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After finally feeling like I had the right medications to manage my anxiety and depression, I started Trikafta®, and everything changed. Struck with fatigue, all I wanted to do was stay in bed.
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If not for my mother and my wife, I would not have survived this arduous, 50-year journey with cystic fibrosis. But now I have another ally: Trikafta® is having a substantial impact on my health.
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It took me 38 years to find a fitness program to stick to. And since I started TrikaftaTM, I am even running for the first time in my life -- and almost enjoying it!
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I am both excited and scared that my son will be old enough to try Trikafta when he turns 12 later this year. In some ways, I can hardly wait to see how he will benefit. But I also know that he might experience side effects, and I don't want him to have any setbacks.
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Trikafta® has done wonders for my health but not my waistline. I was relieved to find out, however, that I wasn't alone in my concern about my sudden weight gain and that bringing the topic up to my care team didn't mean that I wasn't grateful for all Trikafta has done for me.