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Seizures are only part of the burden of epilepsy, and for some individuals, not even the major part. Missed educational, occupational, and social opportunities coupled with low self-esteem and low self-expectations often cause the greater harm. Public misperceptions about epilepsy and the widespread fear of seizures contribute to social and psychological disability. In this issue of Neurology, Krauss et al.1 provide a critical assessment of how epilepsy (“The Scarlet E”) is presented in the English-language print media. Among 210 stories about epilepsy published between 1991 and 1996, nearly one-third contained inaccuracies. These included wrong information about epilepsy (14%), unrealistic expectations about new treatments (9%), and exaggeration of the risks associated with seizures (5%). Information on first aid for seizures was often dangerously incorrect. Seizures were sometimes described using supernatural, especially demonic, imagery and treatments were represented as miraculous cures or even divine intervention. Inaccurate information was most often attributed to patients or their families; physicians and pharmaceutical companies were other sources. Epilepsy organizations provided the most accurate information about seizures and epilepsy.
Epilepsy affects more than 2.3 million Americans. In a recent survey conducted by the Epilepsy Foundation,2 persons with epilepsy listed stigma as being one of the …
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