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.
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Carbon Biosciences is the first company to publicly launch from the Foundation’s collaboration with Longwood Fund and the first to work alongside CF Foundation researchers at the Foundation’s therapeutics lab
I didn’t realize how important my cystic fibrosis care team was — or how they had my back — until I stayed in a hospital where the staff had little knowledge of the needs of people with cystic fibrosis.
I was diagnosed with stage IV colon cancer. After one year, I’m still fighting a tiring battle with it and cystic fibrosis, but I won’t quit.
I was not emotionally prepared the first time I saw my daughter in her vest. But now, I am thankful to have this device as a part of our daily routine to keep her lungs healthy.
The cystic fibrosis care model is evolving to support people living longer with CF and their increasingly diverse health needs. Catalyzed by the approval of Trikafta® and the COVID-19 pandemic, this adaptive and personalized care model encompasses novel ways to connect clinicians and patients.
I asked the Cystic Fibrosis Foundation’s Dr. Whitney Brown about how cystic fibrosis care might change as the CF population grows, lives longer.
As an adult with cystic fibrosis, I know I am blessed to be healthy right now. I find joy in spreading awareness of CF and encouraging others to follow their dreams no matter what.
When my daughter was diagnosed with cystic fibrosis, I found it difficult to explain this disease to my parents in Spanish, and I also felt alone in my rural community. That is why I think it is important to bring CF awareness to the Hispanic community.