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Deadly Eating Disorder Defies Definition

Millions of Americans suffer from "EDNOS"—an "unspecified" eating disorder that's more lethal than anorexia or bulimia.

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Not anorexic or bulimic, but dying to be thin.
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By May Wilkerson

11/15/12

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Although anorexia and bulimia are the most well-known eating disorders, they aren't actually the most common—or the most dangerous. Of the 24 million people in the US with eating disorders (according to the National Association of Anorexia Nervosa and Associated Disorders), up to 70% have EDNOS, which stands for "eating disorder not otherwise specified." EDNOS is a disorder that doesn't fully meet the criteria of anorexia or bulimia—although many of the symptoms are the same. The condition can be difficult to diagnose because symptoms tend to vary from one person to the next, and many sufferers look healthy—but EDNOS has a 5.2% mortality rate, which is higher than anorexia or bulimia. "It's still a misperception out there that these are relatively benign sorts of disorders or diets gone bad," says Dr. Douglas Bunnell, a clinical psychologist and vice president of The Renfrew Center. "These are life-threatening, serious illnesses. They have the highest mortality rate of any psychiatric diagnosis."

Many with EDNOS experience damaging health effects, such as loss of menstruation, fainting and arrhythmia. But misperceptions about the disorder can make it difficult for those who are diagnosed. Taylor is a 20-year-old who has struggled with an eating disorder since she was 12—and although calorie restriction has damaged her health, she doesn't meet the weight criteria for anorexia. "Because you only hear about bulimia and anorexia," she says, "A lot of people don't think—just because you don't meet the weight criteria, 'Oh, you don't have an eating disorder.'" For 23-year-old Ali, a combination of compulsive exercise and calorie restriction caused her to experience frequent fainting spells—but she resisted getting help, since her condition didn't fit the "mold" of conventional eating disorders. "I was just scared," she said, of her deteriorating health. "I didn't know what was happening." Both Ali and Taylor are in treatment for EDNOS, which is similar to treatment for bulimia or anorexia: the first step is to restore physical health, and the second is to focus on the psychological issues underlying the disorder.

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