Original ArticleWhat is the Worst Part About Having Epilepsy? A Children's and Parents' Perspective

Do children and parents view epilepsy similarly? Children and their parents at an epilepsy camp received a voluntary survey. Twenty children (aged 9-15 years) and their parents responded. Fifty percent of children and 27% of parents thought social stigmatization comprised the worst part of having epilepsy, whereas 38% and 40%, respectively, chose physical seizures. Over half of children and parents would want to have fewer or no seizures if they could change one thing. Sixty-seven percent of children and 93% of parents agreed that epilepsy camp was fun, and the other third of children considered it a place where they felt normal. Overall, children with epilepsy and their parents agreed. Despite the morbidities and potential risks of seizures and of the treatments themselves, the majority of children were most concerned with the stigma attached to having epilepsy.