On the brink of being listed for lung transplant, I started Trikafta®, which has helped stabilize my health and helped me avoid it for now, but a transplant could be in my future.
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After decades of identifying myself as Monique, “the girl with cystic fibrosis,” I didn’t know who I was anymore after Trikafta changed my health for the better.
Orkambi® is now approved for use in children with cystic fibrosis ages 1-2 years who have two F508del mutations. This is the only modulator available to very young children with these mutations.
The award — the highest scientific honor awarded by the Cystic Fibrosis Foundation — recognizes those who have made significant contributions to our scientific understanding of CF.
The Quality Care Awards recognize Cystic Fibrosis Foundation-accredited care centers that have continuously demonstrated a commitment to improving the quality of care they provide to people with cystic fibrosis.
The Bonnie Ramsey & Richard C. Talamo Award recognizes individuals who have spent their careers researching and caring for people with cystic fibrosis and whose contributions have altered the course of this disease.
Trikafta® restored my energy and eliminated my cough, but a spike in liver enzymes forced me to take a month-long break from the medication. I'm grateful that I'm back on it and also thankful for what that break taught me.
Even though I haven't cultured for nontuberculous mycobacteria, I was excited to learn more about the treatment for the bacteria in people with cystic fibrosis during the virtual session at the North American Cystic Fibrosis Conference.
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.
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.