What young people know about epilepsy and how they are affected by recurrent seizures

This study's aim was to investigate what young people with epilepsy know about their disorder and how epilepsy and epilepsy treatment affects their lives. By means of a self-reporting questionnaire, information about their knowledge of epilepsy, clinical, demographic, and psychosocial data were collected. The subjects were recruited at a summer camp for young people with epilepsy in Norway. Forty-five people aged 14–30 years volunteered to participate. The majority of those questioned reported that epilepsy and its treatment had a negative impact on their daily lives and their social adjustment. Approximately 50% reported that suffering from epilepsy made them feel useless and more dependent on others; 39% felt they were a burden to their family and friends; and 40% experienced a moderate or high degree of stigmatization. However, none of those with a high level of epilepsy knowledge reported that they felt stigma. Findings from this study emphasize the need for continued education and support for young p...