Misdiagnosis: From One Rare Disease to Another | Amy and Carson Flanagan

My Hero 360 · Oct 29, 2026 · 39m

This My Hero 360 interview features Carson Flanagan and his mother, Amy Flanagan, who share their experience with a mix-up between rare conditions. Carson was first diagnosed with Marfan syndrome as a young child, but genetic testing later revealed that he has homocystinuria (HCU), a rare metabolic condition. They discuss how HCU has changed Carson’s life, especially because he must limit his protein intake and adjust his eating habits as a new college student. The two explain the importance of medical research, raising awareness, and advocating for your child. Throughout the interview, they…