Ehlers Danlos Syndrome: Why Desperate Kiwis Are Flying to Germany for Lifesaving Surgery | RNZ

Sophie Roberts was a healthy, active teenager with dreams of becoming a professional ballerina. Then she developed a series of debilitating symptoms that left her unable to eat, drink or walk. Subscribe: https://www.youtube.com/RNZVideo?subs... For years, she says doctors viewed her illness through the lens of a neurological or psychological disorder, while she and her family became convinced there was an underlying physical cause. After becoming critically ill, Sophie travelled to Germany for surgery to address symptoms some doctors link with Ehlers-Danlos Syndrome (EDS). She says the results transformed her life. Her story is part of RNZ's investigative podcast All In Her Head examining EDS in New Zealand, a condition that has become the source of major disagreement between doctors. Listen to the podcast: https://www.rnz.co.nz/podcast/all-in-... Patients and advocates say some people are being overlooked or misdiagnosed. But many clinicians are skeptical about aspects of the diagnosis and gravely concerned about ‘risky and experimental’ treatments overseas. In this interview, Sophie discusses her illness, the fight to be believed, and why she wants the health system to take a fresh look at patients like her. Read more: https://www.rnz.co.nz/programmes/in-d...