Trikafta made a big impact on my health when I started to take it soon after it was approved in 2019, but after a few years, I started to get sick again. I’m so happy that I can now take the newest modulator, Alyftrek, because it helped me recover from my most recent illness and run my first half marathon this year. Below is a conversation I had with the Cystic Fibrosis Foundation about my perspective on modulators.
How has your experience with cystic fibrosis transmembrane conductance regulator (CFTR) modulators shaped your ability to live the life you wanted?
My experience with CFTR modulators has given me the opportunity to live as much of a normal life as possible with cystic fibrosis. Trikafta and Alyftrek allowed me to play soccer in college and run my first half marathon, while also helping me maintain my health to the best of my ability. That’s amazing considering I was told I would be lucky if I lived to attend high school. Now as an adult with CF, I am looking forward to one day getting married and starting a family — opportunities I never would have had without CFTR modulators.
How did it feel to learn in the plenary about the research underway to better understand the effects of modulators on various aspects of people’s health?
It’s incredible to know that researchers continue to develop even better modulators that could benefit more people with CF. I am lucky to have the F508del mutation, which made me eligible for both Trikafta and Alyftrek right away. But I have friends with CF who have more rare mutations and don't benefit from these treatments. Understanding how modulators work and their limitations will help researchers improve therapies, so that everyone with CF can experience the same life-changing impact that I have.
What do you wish care teams, researchers, and leaders understood about modulators?
Without these medications, I would not be alive. Modulators aren't a cure. They are bandages — tools that have allowed me to live fully until a cure is found. I am reminded of this every time I get sick and have to go back to the hospital. Modulators have given me the chance to live as much of a normal life as possible. But ultimately, modulators are just temporary support tools rather than permanent solutions.
What gives you hope when you think about the future of CF care?
I am hopeful for the future of CF care, where treatments may become less burdensome, and quality of life continues to improve. We have come so far. People with CF have been given the opportunity to live longer, fuller lives and to start careers and families.
There has also been so much collaboration between researchers, doctors, and patients that new clinical trials are moving faster, and the focus is shifting toward not just extending our lives but improving the quality of our lives. I hope that the CF community continues to advocate for one another, to keep funding research, and to raise awareness of cystic fibrosis.
People with CF are no longer on their own and are leading the conversation. That momentum gives me hope that we will see even bigger breakthroughs in the future, such as gene therapies, or even ultimately a cure!
You can watch Sydney's story during the plenary 1 video:
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