I have faced the continuous need to self-advocate to manage my life with cystic fibrosis, particularly when facing complications post-transplant.
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My mom was always my biggest advocate and most selfless caretaker, but she went above and beyond when she also took my friend under her wing.
My daughter, Lauren, didn’t know that having a lung transplant would greatly increase her risk for cancer until it was too late. Her death has taught me how important it is to know the health risks faced after transplant and our need to advocate for ourselves.
I felt unrelenting hope watching the first plenary of this year’s North American Cystic Fibrosis Conference. As I learned about progress that has been made in sickle cell disease, and how those learnings may help us develop a genetic therapy for CF, it showed me that the CF community is supporting people like me who can’t take modulators.
As cystic fibrosis damaged my lungs, I did all I could to make it to my university graduation before I underwent lung transplant.
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.