Sudden Unexplained Death in Epilepsy

(WTNH) - Thousands of people in Connecticut live with epilepsy. But there is an uncommon condition linked to the seizure disorder that you may not know about. It is called Sudden Unexplained Death in Epilepsy.

You could count on 15-year-old Kim Piercy for just about everything.

"She was a volunteer for the American Cancer Society," said Hedy Kelley, Kim's mother. "She was a Sunday school teacher, she was a girl scout as well as an assistant leader to a couple of Daisy troops."

That can do attitude continued even after getting diagnosed with epilepsy. But a second seizure sent Kim to the hospital, leading to tragic results.

"They said that they contacted her specialist, they wanted to monitor her blood levels of her meds, took her home that night and found her the next morning," said Frank Piercy, Kim's father. "She had passed during the night."

Kim died of Sudden Unexplained Death in Epilepsy or SUDEP.

"This is a phenomenon that happens with epilepsy, that we do not have a good understanding of," said Dr. Robert Bonwetsch, of Associated Neurologists, P.C.

Dr. Bonwetsch is a neurologist who specializes in epilepsy. While the risk for SUDEP is low, Dr. Bonwetsch revealed some appear to be more at risk.

"What we've learned so far is that patients that have a lot of seizures, that have a lot of generalized tonic chronic seizures, that are on a lot of medications, those are the ones who are higher risk for this," said Dr. Bonwetsch.

Research is ongoing but there's still little known about SUDEP.

"The only things we know that can really help is controlling the seizure as best as we can with as little medication that we can manage the patient with," said Dr. Bonwetsch.

Linda Wallace, the Executive Director of the Epilepsy Foundation of Connecticut said more awareness about SUDEP will help families understand what needs to be done.

"You don't want to frighten families," said Wallace. "People can live normal lives but on the other hand, people need to know everything about it when they are diagnosed."

"Stay on your meds, take your meds when you are suppose to, don't vary from that and be aware that this could happen," said Hedy.