“The Scarlet E”

Abstract

Objective: To examine the coverage of epilepsy in English language newspapers and magazines to determine how they portray the medical risks associated with epilepsy, whether they report research and treatment advances accurately, whether stigmatizing biases toward persons with epilepsy persist, and to examine the sources of errors in reporting about epilepsy.

Background: The print media reflect and shape current views about epilepsy and other neurologic conditions. They also have the potential to further misconceptions about neurologic issues and particular brain disorders. Persistent myths about epilepsy, such as the ancient belief that it is a demonic disorder, can result in discrimination, emotional difficulties, and reluctance to seek effective treatment.

Methods: A large commercial database was used to search for stories about epilepsy from approximately 2,000 English language newspapers and popular magazines. Two epileptologists independently classified story themes and main sources, and screened for the presence of gross errors in 210 stories about epilepsy or seizures. The authors analyzed the metaphors and terminology used to describe seizures and epilepsy.

Results: The majority of English language print stories about epilepsy were accurate depictions of social and medical issues regarding the disorder, most commonly depictions of persons overcoming epilepsy and announcements of new therapies and reports of scientific advances. Thirty-one percent of the stories, however, contained gross errors, most commonly scientific inaccuracy, exaggerated treatment claims, and overestimates of the risks of dying during a seizure. New drug therapies were often described inaccurately by physicians and pharmaceutical spokespersons as curative and without side effects. Patients and their families frequently overemphasized the risk of dying during a seizure and misstated medical issues. Most celebrities with recurring seizures denied having epilepsy. Seizures were described with demonic imagery in 6% of stories. United States epilepsy associations discourage labeling patients as “epileptics”; however, the term was used in 45% of stories.

Conclusion: Physicians and reporters should be aware of both professional and popular biases that influence the print media’s presentation of the causes and consequences of epilepsy.