Growing up with cystic fibrosis, my parents always encouraged me to take responsibility and be open and honest about my disease. That's why my number one piece of advice for parents of kids with CF is to entrust your child with small bits of responsibility at an early age so that they can take care of themselves down the road.
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My experience with complications after lung transplantation led me to join a group that is trying to make it better.
Join us on May 21 at CF MiniCon: Transplant, a virtual event that will focus on transplants for adults with cystic fibrosis.
To the moms of children with CF who feel isolated in their journey — you are not alone. This is my letter to you, from someone who understands.
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.
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.
Caring for a child with CF can be a lot to juggle — from the many medications and daily treatments to the endless doctor's appointments. But I’ve found a system that helps me stay organized and stress-free so that I can focus on what really matters.