More than 60 teens from across the country — 25 of whom live with cystic fibrosis — participated online and on Capitol Hill in the Foundation’s Teen Advocacy Day to advocate for the CF community.
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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.
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.
The CF community supported me so much during my two double-lung transplants, so I’m eager and excited to give back. One of the ways I got involved was by becoming a mentor, which is how I formed an incredible bond with my friend, Brittani.
As cystic fibrosis damaged my lungs, I did all I could to make it to my university graduation before I underwent lung transplant.
With help and support from my parents, I felt empowered to make my first big decision with my cystic fibrosis care: When to remove my G-tube.
Being diagnosed with chronic lung rejection was devastating. However, maintaining hope and a positive mindset helped me look forward to the future and smile again.
When my daughter was born, her newborn screening indicated that it was unlikely she had CF. But after months of mysterious symptoms, a sweat test confirmed her diagnosis. This unlocked answers not only for my daughter, but for our entire family.
When I lived with advanced lung disease, I never expected to feel good again. But after receiving a double-lung transplant, my whole world changed.
Living with an illness like advanced lung disease can be incredibly isolating and limiting. But I’ve found a way to connect with others and make my own adventures through online gaming.