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.
Dr. Jennifer Taylor-Cousar is passionate about bringing attention to health inequities in cystic fibrosis. By partnering with the CF Foundation, other organizations, and the CF community, she believes we can work together to create equitable health outcomes for everyone with CF.
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Having already been underwhelmed by Orkambi® and Symdeko®, I was skeptical about whether the triple-combination therapy would live up to the hype. However, after a month of being on Trikafta®, I feel improvements in my lung function, weight, and overall energy.
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The imagination can run wild thinking of all the possible scenarios that could happen after trying the new triple-combination modulator, Trikafta™. Managing expectations -- while allowing yourself to hope -- is how I choose to approach my wait for the new drug.
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After 33 years of living with cystic fibrosis, I thought I knew my body pretty well. Since I started on Symdeko®, I have noticed that my body is different, and I need to re-learn how to interpret my symptoms.
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Many people with cystic fibrosis are counting on cystic fibrosis transmembrane conductance regulator modulators to improve their overall health. I'm learning that they have effects I hadn't counted on.
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I had to stop taking Orkambi® because my body couldn't handle it. I'm having a different -- better -- experience with Symdeko™.
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Researchers are exploring treatments that will keep people with cystic fibrosis as healthy as possible until a cure is found. In the first plenary at the NACFC, two CF scientists explain the progress of current research.