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Youth with Epilepsy Seek Respect, But Often Face Isolation and Bullying

2/1/2002:   One in 100 teens has epilepsy, i.e., a neurological disorder that may be manifested in either frequent or rare seizures of one or more types. Epilepsy can usually be treated successfully with one or more medications--so successfully, in fact, that often only one’s physician and family members know about it.

A survey in 2001, funded by the Centers for Disease Control and Prevention, of 19,441 teens found that the less teenagers are aware of epilepsy, the more likely they are to engage in behaviors that result in stigma and discrimination. Because they want so much to “fit in” with their peers, teens are particularly affected by such attitudes and behavior. The survey found that, of the chronic health conditions relatively common among youth, such as asthma and diabetes, epilepsy is the least understood and thus likely to be the most stigmatizing.

According to the survey:
  • 19% erroneously think epilepsy is a form of mental illness;
  • 37% said kids with epilepsy are likely to get picked on more than other kids;
  • Almost half were not sure if the condition is contagious (it is not);
  • 11% would not date and 44% are not sure if they would date someone with epilepsy;
  • 70% would want their friends to tell them if they had epilepsy, yet only 46% say they would tell their friends if they had epilepsy;
  • 24% of females and 18% of males have known someone with epilepsy; and
  • 52% said they have ever heard of or read about epilepsy; as expected, however, older youth were more likely than younger respondents to have information about or contact with someone who has epilepsy.

In response, an epilepsy awareness campaign “Entitled to Respect” is now underway to correct misinformation and to reduce fears about seizures. Through peer-to-peer communication and celebrity spokespersons, including public service announcements by the *NSYNC musical group, the campaign:
  • communicates the message that teens with epilepsy deserve the same respect as anyone else,
  • provides basic information, and
  • gives instructions about first aid for seizures.

Go to www.entitledtorespect.org for more details as well as posters and brochures that can be downloaded. These items are also distributed through clothing stores, doctor’s offices, health classes, guidance offices, libraries, coffee shops, in-school and community outreach presentations, and afterschool programs.

The campaign is sponsored by the Epilepsy Foundation, a nonprofit volunteer organization devoted to research for the cure of epilepsy and to education, advocacy, and the provision of services for people with seizure disorders and their families. The website, www.epilepsyfoundation.org, includes a BLURT Message Board, featuring a Teen Chat Group, Spellbound (a game to discover what you do and don’t know about epilepsy), Fast Facts, How to Help, and information for parents, professionals, and persons with epilepsy. How well are you informed?

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