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

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 encourage others to stay positive, ask questions of medical professionals, and keep pushing through life’s challenges. This episode was developed in partnership with HCU Network America. Key Highlights: • Hear about Carson’s journey to finding the right diagnosis through genetic testing. • Learn how Carson is learning to balance a strict, low-protein diet with college and social life. • Be inspired by Amy’s search for the right diagnosis for her son and why she wants to spread awareness about HCU. • Hear about how connecting with HCU Network America, a patient advocacy group, has helped Amy and Carson learn more about their new reality. 00:00 Introduction & Background 02:23 From Marfan to HCU: A Misdiagnosis Story 09:08 A Series of Surgeries 16:25 HCU Patients Deserve Options 28:07 Connecting With HCU America 38:20 Advice to Younger Selves 39:00 Closing Remarks Connect with HCU Network America: https://hcunetworkamerica.org/    / @hcunetworkamerica     / hcu_network_america   About My Hero 360: At My Hero 360, we honor, celebrate, and connect heroes worldwide. By sharing their stories, we aim to inspire and provide hope for humanity. Follow us to hear more incredible stories of unsung heroes who make a difference in the world. Support My Hero 360: https://myhero360.com/   / myhero.360     / myhero.360   Listen to Our Heroes’ Stories: Apple Podcasts: https://podcasts.apple.com/us/podcast... Spotify: https://open.spotify.com/show/1LnJ9ce... Amazon Music: https://music.amazon.com/podcasts/aa4... Subscribe to this channel for more inspirational stories