Epilepsy Outreach News
Epilepsy: 'People don't talk about it'
July 13, 2009
Erin Leyden holds her son, Emmett, while on a walk with her sister Tracy.
(Tom Cruze/Sun-Times)Mom honored for outreach, support for other parents
Imagine that you have an otherwise healthy toddler, and then one day -- out of the blue -- he starts falling down.
But he doesn't just crumple to the floor -- he drops suddenly, violently and without warning.
"He would literally collapse," Erin Leyden said of her then-2-year-old son, Emmett. "He would be at the table, and his head would collapse."
Emmett has a rare form of childhood epilepsy and at its worst, says his mother, whose family lives in Norwood Park, the little boy had as many as 200 seizures a day.
Two-and-a-half years after his first seizure, Emmett is doing much better, thanks in part to the right medication, Leyden said. Now Emmett's family is trying to help other parents faced with the sometimes terrifying seizures associated with epilepsy.
"We noticed there wasn't enough support for children out there and there wasn't enough information out there," Erin Leyden, 39, said. "We would always [read about] people living well with epilepsy. We never heard the reality of it. People don't talk about it."
Leyden, her husband and her sister-in-law started a Web site (epilepsyoutreach. org) about two years ago that provides information about the disorder and allows people to have their questions answered by medical specialists.
Even though epilepsy has been recognized since "biblical times," Leyden said, the stigma and misinformation associated with it remains.
Leyden said it's less an issue of people being cruel, and more about the lingering epilepsy myths. Plenty of people incorrectly believe epilepsy is contagious or that you need to push something hard into someone's mouth during a seizure to stop them from swallowing their tongue, Leyden said. And those who live with epilepsy are often embarrassed by it.
"Some people soil themselves [during a seizure]," Leyden said.
Leyden said her family tried nine different medications during the 16 months Emmett had seizures. A high-fat diet helped, as did finally finding the right specialist and medication, Leyden said. Emmett hasn't had a seizure in almost two years, she said.
This week, Leyden is being recognized for her efforts with epilepsy as part of People magazine and Major League Baseball's "All-Stars Among Us" campaign. Leyden, nominated for the award by her sister Tracy Leyden, will be honored in St. Louis before the 2009 MLB All-Star game on Tuesday.
"The real all-star is probably Emmett," Leyden said. "He's an amazing kid."
http://www.suntimes.com/health/archive/1663008,CST-NWS-epilepsy13.article
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