The Hirschsprung’s Hour: Inspiring Stories and Advocacy with Dr. Carla Scaramela
Episode Overview
Dr. Carla Scaramela shares her personal story and the founding of Hirschsprung’s Argentina. The episode discusses challenges in diagnosing Hirschsprung’s disease and the importance of healthcare education. Carla highlights the support network for families affected by Hirschsprung’s disease in Latin America. Links between Hirschsprung’s disease and other conditions like autism and Crohn’s disease are explored. Future goals for raising awareness and improving diagnostics are discussed.
I started the group, but the moms and dads did the rest... they are the ones who give words of challenge and support to each other.
Tom Richard hosts an eye-opening episode of The Hirschsprung’s Hour, featuring Dr. Carla Scaramela, the director of Hirschsprung's Argentina. This episode dives into the profound impact of Hirschsprung’s disease, a condition affecting 1 in 5000 babies in the UK. Dr. Scaramela shares her journey from clinical research to founding Hirschsprung’s Argentina, driven by her personal loss of her son Augusto to undiagnosed enterocolitis.
Her story is both heart-wrenching and inspiring as she discusses her mission to provide critical information and support to families affected by this rare disease. Tom and Carla explore the challenges faced by Hirschsprung’s patients, including the frequent misdiagnosis of enterocolitis and the need for better awareness among healthcare professionals. Carla emphasises the importance of creating a supportive community for families, highlighting how her organisation has grown to include over 50 families across Latin America.
The conversation also touches on the links between Hirschsprung’s disease and other conditions like autism and Crohn’s disease. Carla's dedication to improving diagnostic processes and educating healthcare providers is evident as she discusses future goals for the charity, including organising awareness events for medical professionals. If you’re looking for a story of resilience and community spirit, this episode is a must-listen.
Carla’s passion for helping others shines through, making this a compelling and educational experience for anyone interested in rare diseases and patient advocacy.