I have lived my entire life with Cystic Fibrosis.
Growing up with this genetic disease, I constantly felt different. Be it coughing every few minutes, being out of breath after walking, or hospitalizations that took me into isolation and away from my friends, I knew that my life was not normal. Pair this with a life expectancy in the mid-40s, and every day brought up new uncertainties. I waited for years and years, following the science closely, in the hope that some type of new treatment would help me. There was one medication in the clinical trials that showed a lot of promise that it could be my essential cure, but I had no idea if or when I’d get it.
Fast forward to October 21st, 2019. I was headed back to my study abroad program in Barbados after a hospitalization in Miami. One text from my dad - “Your medicine was approved by the FDA, 5 months early!” – and my life changed in an instant. I started sobbing. My phone started to blow up as the news spread around the country. My friends and family called me in tears, knowing how big this was. Trikafta, the medicine that had the potential to change everything, had just been approved five months ahead of schedule by the FDA. If all went well, I’d be on it as soon as I returned to the US in December. It’s a weird feeling – almost indescribable – the moment you realize your life is going to change forever. Everything I knew, all of my struggles, had the potential to be gone.
On December 12th, I popped the champagne with my family and took my first dose of Trikafta. We cheersed to the first day of the rest of my life. And everything changed.
Fast forward three months: My lung function is above 100%, and I have lung capacity better than a healthy non-CF person my age. I can take big deep breaths without gasping for air or having a coughing fit. I can actively feel the small alveoli in my lungs (that had never been used before) start to work for the first time.
My doctors are astonished with how well I’ve done on this drug, and my life expectancy has gone up and continues to steadily increase. My boyfriend and I can plan our future together because I know I’ll actually have a future. I’ll walk across the stage to get my college degree! ! I can get a dog! I can get my Masters! I’ll have kids one day! I watched my world and all my possibilities open up before my eyes. Now, the sky is the limit for me, and I plan on taking advantage of every single opportunity that comes my way. For the rest of my long, long life.
Written by Abby Robinson