Welcome to RARING, the voice of the rare disease community and a no-BS forum for patients and their families, rare disease patient organizations, and medical professionals. If you live with a rare disease or love someone who does, RARING is the podcast for you, by you, and with you every day. Tune in to hear leading experts discussing next-generation diagnostics and treatments. Learn from passionate nonprofit leaders talking about their highs and lows fighting for their communities. And laugh and cry as real patients and caregivers like you share authentic and inspirational stories about their challenges and struggles to busy living. RARING: Because together, our voices are louder.
Today’s show is all about one patient’s story navigating the world of rare disease, you know – the club you didn’t ask to join, but somehow, once you’re here, you’re kind of family? Sarah Hill had a life interrupted at a very young age. After being fabulously misdiagnosed and not taken seriously for years, at the age of 16, all of the dots finally connected, and it was correctly identified that she had Wolfram Syndrome. This one’s a heavy hitter, folks. Wolfram is a rare autosomal-recessive genetic disorder that causes childhood-onset diabetes insipidus, diabetes mellitus, optic atrophy, deafness, and various other possible disorders. Isn’t it hard enough to be “WELL” in your teens and twenties, let alone slapped with a life-changing health condition you didn’t ask for? Ladies and gentlemen — Sarah Hill.
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