Publications on the topic of appropriate labels for someone with diagnosed epilepsy have so far almost exclusively consisted of views of professionals in this field. Researchers conducted an online study of patients treated for epilepsy and persons close to them with the aim of identifying how they prefer their epilepsy be referenced, whether they oppose the term “epileptic”, and which characteristics are related with their preferences. In total, 328 responses were analyzed.
Subjects mostly favored “person-first” terminology (“person having epilepsy” and “person with epilepsy”), and 53.9% disapproved of the term “epileptic”. Parents of patients are more likely than patients themselves to favor “person having epilepsy” and to disapprove of “epileptic”. These results can help with shaping future terminology recommendations.