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On Valentine’s Day 2013, Lise Stern got a call from the University of Miami, where her son Eitan was a freshman. “There is no easy way to say this,” said the dean on the other end. “Your son has passed away.”
Eitan Stern-Robbins was 18 when he died in bed in his dorm room, from something neither he nor his parents had ever heard of: Sudden Unexpected Death in Epilepsy (SUDEP). Eitan had suffered from epileptic seizures since age 11, but with medication had been able to limit them to every year or even two.
Stern worried about her son, but Eitan’s doctor had never explicitly mentioned the possibility of death.
“Since the majority of people don’t die from epilepsy, doctors feel why needlessly worry the patient?” says Stern. “My feeling is that awareness can bring prevention.”
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