Teen Advocate to World: "We are More than Our Diseases"

RARECast - Ein Podcast von RARECast - Donnerstags

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Teenage girls, under normal circumstances, wrestle with issues of identity and body image. But for young women with a chronic, rare disease, those struggles can be more complicated. That makes the wisdom, self-awareness, and self-confidence that shine through The Sick Chick blog all the more remarkable. We spoke to Shira Strongin, founder of The Sick Chick and a Global Genes 2015 honoree for teen advocacy, about her battle with Ehler-Danlos Syndrom, how she’s come to appreciate what her disease has taught her, and her work with other teen rare disease advocates to form We Are More, an effort to convey to the media and public that teens with chronic illnesses are defined by more than their diseases.

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