Entitled to Respect Initiative

The Epilepsy Foundation is spearheading an aggressive, multi-faceted national education and awareness initiative, known as the Entitled to Respect Initiative, to improve the quality of life for young people with epilepsy. The overarching goal of the program is to fight stigma and to help vulnerable children and teens with epilepsy make a healthy adjustment to their condition and achieve a positive quality of life. A grant from the Centers of Disease Control and Prevention is funding the program.

The purpose of the Entitled to Respect Initiative is:

• To provide youth with epilepsy the resources to develop positive health habits and a support network to help overcome the difficulties associated with epilepsy; and
• To provide peers of youth with epilepsy and other members of the school community with a basic understanding of epilepsy and its impact and thus combat stigma associated with it.

The Entitled to Respect Initiative was developed in part by the astounding results of a national survey conducted in 2001. The national survey collected data about the prevailing attitudes, perceptions, beliefs and behaviors about epilepsy among the general teen population. Approximately 20,000 surveys were collected nationwide.

Key Findings - Teen Survey

• Of seven diseases mentioned, teens are least familiar with epilepsy. More than two-thirds (68%) are either "not too familiar" or "not at all familiar" with epilepsy and only 8% are "very familiar."
• Only about half of the teens (52%) surveyed have ever heard of or read about epilepsy.
• Due to a lack of knowledge about this disorder, most teens do not fear epilepsy. Fear is higher among teens that know more about epilepsy.
• The majority of teens surveyed do not know about the specific nature of epilepsy. For example, they do not know if it is contagious, if it is a mental illness, whether doctors know its cause, or if people die from seizures.
• Teenagers are mostly unclear about the levels of stigma associated with epilepsy. One third (37%) however, did view kids with epilepsy as more likely to be bullied or picked on by peers.
• Teens are unable to describe how epilepsy can impact lifestyle. The biggest misconceptions involve people with epilepsy and driving. One in five surveyed think people with epilepsy cannot drive cars and only 32% know that most can drive.
• Two-thirds (67%) of teens responded that they would not or probably not know what to do if someone had a seizure.
• Awareness and understanding of epilepsy tends to be higher among girls, older students, and white students.

Entitled to Respect Program Activities - 2002

• National Media Campaign
• Epilepsy Month 2002 dedicated to youth
• Educational Materials
• Website and online programs
• Local community programs

Local Community Programs

Several local Epilepsy Foundation affiliates are participating in the Entitled to Respect Initiative. The local programs include public education, support programs and media campaigns. For information the local Entitled to Respect program in your area, please contact your local affiliate by using our affiliate lookup tool.

Additional Information

For additional information or a copy of the full report on the Teen Survey on Epilepsy, please contact the Senior Director of Government Programs, Epilepsy Foundation, (301) 918-3728.