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'Scarlet E' still taints media, still distorts epilepsy

hem 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.


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Contact: Marjorie Centofanti
mcentofanti@jhmi.edu
410-955-8725
Johns Hopkins Medical Institutions
22-May-2000


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