Life is full of transitions. Growing up, going to school, starting a family, changing doctors. Almost everyone experiences these changes, but going through these while living with a complex illness may present additional or unique challenges. The below resources will help you prepare and navigate.
Rare Experiences
Find other stories of people managing change.
Jonah
Glycogen Storage Disease Type Ia (GSDIa)“As I got older, I started learning how to listen to my body to know when I needed something.”
Tasia
Long-chain Fatty Acid Oxidation Disorder (LC-FAOD)“I see kids who are struggling the same way that I did, and just being able to be a beacon of hope for them, that in itself really helps me.”
