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.
![Zanny flexing her bicep which has a PICC line in it](/sites/default/files/styles/image_card/public/2024-04/Zanny-Steffgen-Featured-Image.png?h=8abcec71&itok=Fr7k5PvA)
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.
![A professional headshot of Zanny Steffgen](/sites/default/files/styles/author_thumbnail/public/2024-04/Zanny-Steffgen-Headshot.png?itok=oD3iLvkp)
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At first, it was easy to get my son to do his cystic fibrosis treatments. But as he got older, he started to hide his medications, rather than take them. I finally learned how to get him to see the importance of taking his medications.
![Lathronia-Jefferson-Headshot](/sites/default/files/styles/author_thumbnail/public/2021-09/Lathronia-Jefferson-Headshot.jpg?itok=mltjD2qG)
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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.
![Misty-Roussa-Headshot-Square](/sites/default/files/styles/author_thumbnail/public/2021-09/Misty-Roussa-Headshot-Square.jpg?itok=_URgU2UO)
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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.
![Vincent-Donato-Headshot-Updated](/sites/default/files/styles/author_thumbnail/public/2021-09/Vincent-Donato-Headshot-Updated.jpg?itok=WGwqh1Ug)
![Trikafta-is-here-rectangle](/sites/default/files/styles/image_card/public/2021-09/Trikafta-is-here-rectangle.jpg?itok=-ezk9liQ)
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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.
![Elizabeth-Amber-Headshot](/sites/default/files/styles/author_thumbnail/public/2021-09/Elizabeth-Amber-Headshot.jpg?itok=xJXkIDl1)
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When the news of the Trikafta™ approval came out, I was simultaneously excited for people with CF that would benefit and disappointed that another new medicine is passing me by. But, hearing about the next wave of research into a cure for ALL people with CF has me looking forward to the future.
![Chuck-Fox-Headshot](/sites/default/files/styles/author_thumbnail/public/2021-09/Chuck-Fox-Headshot.jpg?itok=HCIigxvu)
![Hanna-Phan-Hospital-Featured-Rectangle](/sites/default/files/styles/image_card/public/2021-09/Hanna-Phan-Hospital-Featured-Rectangle.jpg?itok=2Txq0flu)
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As a CF pharmacist, I've received many questions about complementary and alternative medications and supplements over the years. Although I am admittedly not the first person to “jump at the idea,” I always make sure to stay informed about available products and listen to my patients without judgement so that we can partner together to develop the best treatment plans for them.
![Hanna-Phan-Headshot](/sites/default/files/styles/author_thumbnail/public/2021-09/Hanna-Phan-Headshot.jpg?itok=_FB0tcxr)