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Today we celebrate the 
https://abs.twimg.com/emoji/v2/... draggable="false" alt="1️⃣" title="Tastenkappe Ziffer 1" aria-label="Emoji: Tastenkappe Ziffer 1"> year anniversary of the approval of Trikafta, a CFTR modulator for people with cystic fibrosis ages 12 and older with at least one F508del mutation.
As we celebrate, let& #39;s look back on the reflections of the CF community from the last year.https://abs.twimg.com/emoji/v2/... draggable="false" alt="🧵" title="Thread" aria-label="Emoji: Thread">
As we celebrate, let& #39;s look back on the reflections of the CF community from the last year.
What does “better” mean on a highly effective modulator? Elizabeth Amber shared how she managed her expectations – while allowing herself to hope – while waiting for a CFTR modulator therapy drug. https://www.cff.org/CF-Community-Blog/Posts/2019/What-Does-Better-Mean-on-Trikafta/">https://www.cff.org/CF-Commun...
Underwhelmed by Orkambi and Symdeko, Vincent Donato was skeptical about whether Trikafta would live up to the hype. After a month on the modulator, he writes about the improvements he noticed in his lung function, weight, and overall energy. https://www.cff.org/CF-Community-Blog/Posts/2020/Trikafta-Shattered-My-Negative-Attitude-and-Expectations">https://www.cff.org/CF-Commun...
After two weeks on a highly effective modulator, @MeaganJohanna’s lung function increased by 15%. What she didn’t expect, however, was to gain 10 pounds in six weeks. She opens up about talking to her CF care team about her weight gain and concerns. https://www.cff.org/CF-Community-Blog/Posts/2020/What-I-Learned-About-My-Trikafta-Weight-Gain">https://www.cff.org/CF-Commun...
Misty Roussa, a mother of a soon to be 12-year-old with cystic fibrosis, shared the emotions she experienced as she waited for her son to be eligible for the triple-combination therapy. https://www.cff.org/CF-Community-Blog/Posts/2020/The-Wait-For-My-Sons-Trikafta/">https://www.cff.org/CF-Commun...
It took Shannon Curtis, an adult living with cystic fibrosis, 38 years to find a fitness program that she could stick with. Since starting a highly effective CFTR modulator, she is running for the first time in her life – and enjoying it. https://www.cff.org/CF-Community-Blog/Posts/2020/Exceeding-My-Fitness-Goals-With-Trikafta">https://www.cff.org/CF-Commun...
In 1970, Mark Tremblay was diagnosed with cystic fibrosis at 18 months old. He writes how without the support of his mom and wife, he would not have survived his 50-year journey with CF to see and experience the triple-combination therapy. https://www.cff.org/CF-Community-Blog/Posts/2020/From-Mist-Tents-to-Trikafta">https://www.cff.org/CF-Commun...
After years spent living with depression and anxiety, Lauren Lavelle had finally found stability with the help of medication. Then she started a new CFTR modulator, and everything changed. https://www.cff.org/CF-Community-Blog/Posts/2020/Trikafta-Caused-My-Anxiety-and-Depression-to-Return">https://www.cff.org/CF-Commun...
Before starting the triple-combination therapy, @MeganJohanna struggled to go four hours without an additional breathing treatment. On Trikafta, she hasn’t needed to do a breathing treatment in five months. But control of her CFRD remains elusive. https://www.cff.org/CF-Community-Blog/Posts/2020/CFRD-is-the-Cloud-in-My-Trikafta-Silver-Lining/">https://www.cff.org/CF-Commun...
Despite feeling the healthiest she has in years thanks to a highly effective modulator, @katief shares why she continues to maintain her social distance because of the #COVID19 pandemic. https://www.cff.org/CF-Community-Blog/Posts/2020/Im-Healthy-With-Trikafta-but-Stuck-Inside-Because-of-COVID-19/">https://www.cff.org/CF-Commun...
Do CFTR modulators increase the chance of pregnancy for women with cystic fibrosis? Maddie Poranski, an adult with CF, had a candid interview with @JenTaylorCousar to answer this question and more about reproductive health. https://www.cff.org/CF-Community-Blog/Posts/2020/Reproductive-Health-Q-A-How-Modulators-Affect-Fertility-and-Pregnancy-in-CF/">https://www.cff.org/CF-Commun...
As an adult with cystic fibrosis with rare and nonsense mutations, Caroline Starnes is not eligible for any CFTR modulators. She shares how she still lives a full life with CF, including marriage, cooking, and skeet shooting. https://www.cff.org/CF-Community-Blog/Posts/2020/Despite-the-Detours-I-Live-a-Full-Life-With-CF/">https://www.cff.org/CF-Commun...
Trikafta’s approval means a significant percentage of people with CF could eventually have a highly effective therapy for the underlying cause of their disease. But we won’t rest until there is a cure for everyone with CF, regardless of mutation or stage of their disease.
