Kids with Epilepsy Need Information, Emotional Support

November is Epilepsy Awareness Month. A recent study shows teens with epilepsy often turn to the internet to seek support and express fears about social isolation, bullying and suicide.

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CLEVELAND – November is National Epilepsy Awareness Month.

Epilepsy is the fourth most common neurologic disorder – about 1 in 26 people will develop epilepsy in their lifetime.

Tatiana Falcone, M.D., of Cleveland Clinic was part of a recent study that looked at what kids with epilepsy search for online.

“For kids, many of the conversations were about stigma – how hard it is to have a seizure at school,” said Dr. Falcone. “It was about bullying – how people were seeing them different because they had epilepsy; how people were isolating them because they looked different, or after they had a seizure, people were not treating them the same.”

Dr. Falcone and her team studied 222,000 online conversations about epilepsy.

Of those conversations, 3,200 were teens talking about suicide, and 5,800 of them were adults talking about suicide.

Dr. Falcone said when teens discussed suicide, they were typically asking for help and looking for answers.

“They were looking for information; they were looking to try to understand more about their illness; they were trying to understand what kind of epilepsy they had,” she said.

She adds that between 30-50 percent of people with epilepsy also suffer from depression, which is a risk factor for suicide and that other research shows the annual rate for suicide among people with epilepsy is 22 percent higher than the general population.

Dr. Falcone said it’s important to make sure young people with epilepsy are able to get their questions answered by their doctor, and to increase the available resources online written by professionals who care for people with epilepsy.

“For adolescents with epilepsy, emotional support is very important and they might not be asking the questions to their parents,” she said. “They might be asking the questions to other teens with epilepsy. Sometimes it’s hard to find that support, and it looks like they’re trying to find that support online.”

Dr. Falcone believes physicians should talk about suicide prevention with young patients and their parents.

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