RARECast: Teen Advocate to World, “We are More than Our Diseases”

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 Sick Chick and a Global Genes 2015 honoree for teen advocacy, about her battle with Ehlers-Danlos Syndrome. She spoke about  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.

RARECast is a weekly series by Daniel S. Levine. Levine is an award-winning business journalist who has reported on the life sciences, economic development, and business policy issues throughout his 25-year career. He founded Levine Media Group in 2013, which produces The Bio Report and RARECast podcasts. Read his full bio here.