Abstracts

Rationale: Epilepsy has long been associated with disgrace and negative attitude. Epilepsy can lead to decreased social interaction, lower employment rate, and thus,lower quality of life. There have many efforts over the last 15 years to educate the public and improve quality of life in those affected by epilepsy. The purpose of this study was to identify if negative perceptions were still present and what steps could be taken to reduce them. Methods: A survey study was conducted at the Neurology department at Beth Israel Medical Center in NYC. The population consisted of: patients admitted on the neurology floor, epilepsy monitoring unit, patients visiting neurology clinic, their relatives and friends. Exclusion criteria included: anyone under the age of 18 or anyone unable to understand English. Subjects were asked to fill out an anonymous questionnaire. IRB approval was obtained. Results: 132 people responded to the survey. The age ranges were: 18-34 (24%), 35-54 (39%), 55-64 (20%), and 56+ (17%). Seventy-three were women and thirty-two were men. The ethnic and racial groups consisted of: (34%) whites, (21%), African-American, (30%) Hispanic, (7%) Jewish, (2%) Asian, and (7%) identified themselves as others. The education levels were: (47%) college (+), (19%) had some college, (23%) were high school graduates, and (8%) less than high school. (11%) of the people had epilepsy; all were taking epilepsy medication. (33%) of the people with epilepsy stated that they had been discriminated because of epilepsy, either at work, school, or community (25%), or by family (75%). (33%)of these patients also stated that they had hidden the fact that they have epilepsy. The causes of seizures were identified as: head injury (50%), infection (18%), bad thoughts (3%), sexual activity (1%), alcohol/substance abuse (15%), evil (1%), or mental disease (15%). Subjects believed the treatment of epilepsy was: medication (92%), surgery (24%), spiritual healing (5%), and none (1%). Subjects asked what they could do if someone were having a seizure responded: nothing (6%), hold the tongue (41%), restrict movements: (21%), protect the head (63%), and turn them on their side (40%). Other questions: People with epilepsy are: allowed to drive (40%), have poor learning ability (10%), have fewer work opportunities (16%), can have children (63%). You would: marry an individual with epilepsy (55%), would employ someone with epilepsy to work for you (70%), would be friends with some with epilepsy (86%), would date someone with epilepsy (61%). Conclusions: Significant misconceptions are still present in the community about epilepsy. 33% percent of the patients with epilepsy experienced discrimination due of epilepsy. Other misperceptions or potential discriminatory beliefs included that: epilepsy was identified as a mental disease (15%), holding the tongue during a seizure was appropriate (41%), they would not marry an individual with epilepsy (45%), and they would not employ someone with epilepsy (30%). Our data indicate that educational improvements are still needed for the general community.