May 22, 2000
The age-old stigma against people with epilepsy is alive and well in the print media. That's the consensus of neurologists at Johns Hopkins and the University of Maryland who screened several hundred recent popular press articles on epilepsy/seizures for misinformation or outright errors. Their study appears in this month's edition of the journal Neurology in an article titled The Scarlet E.
Thirty-one percent of the sampled stories contained gross mistakes, including inaccuracy about the science, overestimates of risk of dying from seizures or exaggerated treatment claims, says Hopkins neurologist Gregory L. Krauss, M.D., who led the research team. "Some articles even recycled ancient misconceptions linking seizures to the devil," he says. Forty-five percent were guilty of the less dangerous but still offensive practice of referring to patients as "epileptics," Krauss adds. "The print media reflect and shape current views about epilepsy and other neurological conditions," says Krauss, "But they also have a real potential for further misconceptions, particularly about brain disorders.
"Because of the historic stigma associated with epilepsy," says Krauss, "many of my patients continue to feel shamed or hide their disorder. The press perpetuates this stigma when they use demonic terms, describe typical seizures as "deathly" or even when they de-humanize them as 'epileptics.' While we realize the press reflects attitudes in society as a whole, we were a little surprised at how widespread the stigma is in newspapers and magazines."
One of the "last straws" that prompted the study, Krauss says, was a piece in a popular sports news magazine that praised a team trainer who violently restrained a baseball player during a seizure, calling the trainer a hero. The young man's tooth was knocked out when the coach tried to pry his jaws open. Players were quoted who said the seizure was "killing" their teammate or said the situation reminded them of The Exorcist. "Quotes like those, when used without medical context, breathe new life into old misperceptions that link convulsions with death and the devil," Krauss explains. They also ignore the established medical warning against restraining people in the midst of a seizure.
The researchers examined 210 stories from 73 news sources and 12 wire services. A journalist from The Washington Post searched the commercial Nexis database and interpreted terms while Krauss and a neurologist from the University of Maryland independently analyzed articles for theme, presence of inaccuracies and major source of each story.
The most frequent themes were personal vignettes about overcoming epilepsy, new drug therapies, non-drug treatments and scientific advancements in understanding epilepsy. The most frequent sources for the stories were physicians and researchers (43 percent), followed by public sources such as police (22 percent) and then patients and their families (18 percent).
"A collusion of sorts may exist between reporters, patients and doctors, where they amplify things' importance," says Krauss. "Sometimes the risk of seizures is exaggerated; sometimes unrealistic expectations are given for new treatments. Whatever the source, we see a negative cycle that moves from press to patient. Patients may internalize these attitudes and become ashamed, allowing the stigma to limit their lives.
"When was the last time," Krauss asks, "that you saw a public figure talk openly about his or her epilepsy?"
Other researchers in the study were Alan Krumholz with the University of Maryland, Baltimore, and Fern Shen with The Washington Post.
Related Web sites:
Epilepsy Foundation of America Inc. http://www.efa.org