Epilepsy Held to be Widely Recognized but Poorly Understood

National CDC Survey Finds Knowledge of Seizure Disorders is Low Among Americans

Washington, D.C., December 3, 2003 -- Epilepsy is a widely recognized health condition, but one that is poorly understood, even among those who know someone with the disorder, according to a new study by the national Centers for Disease Control and Prevention. The survey report is published in the November issue of Epilepsia, the journal of the International League Against Epilepsy.

In 2002, a national survey of 4,397 adults found that nearly one-third know someone with epilepsy. This is a slightly lower number, compared with at least one other study that has measured the number of Americans that know someone with epilepsy. However, the study’s authors, Rosemarie Kobau and Patricia Price of CDC’s Epilepsy Program, said, “More surprising was our finding that of people who currently know someone with the disorder, only about 40 percent are knowledgeable about the disorder, and only half of them agree with knowing what to do if a person around them has a seizure.”

The authors offer two possible explanations for the low level of public knowledge, attributing it either to a general lack of education the public has about epilepsy, or to the fact that many people with epilepsy have not educated their family, friends or colleagues about the disorder. They recommend that information about epilepsy should be made available in community settings such as work sites, schools, churches, and stores to improve the general public’s knowledge of epilepsy.

According to Eric Hargis, president and CEO of the Epilepsy Foundation, the CDC survey identifies what many cite as the greatest problem faced by people living with the disorder. “The lack of understanding is a leading cause of discrimination in the workplace and in our schools,” he said. “It’s a huge problem that will take the combined efforts of the voluntary, business and government sectors to resolve.”

The Epilepsy Foundation has always placed a major focus on public education, he said, including current efforts to educate young people at an age when attitudes are just being formed. During November – National Epilepsy Awareness Month – the Foundation conducted a major campaign called Entitled to Respect to engage youth ages 10 to 18 in learning about the disorder. The campaign aimed to improve understanding and social acceptance of children with epilepsy at school and in the neighborhood.

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