Fighting Anorexia: No One To Blame

Parents do play a role, but most often it's a genetic one. In the last 10 years, studies of anorexics have shown that the disease often runs in families. In a 2000 study published in The American Journal of Psychiatry, researchers at Virginia Commonwealth University studied 2,163 female twins and found that 77 of them suffered from symptoms of anorexia. By comparing the number of identical twins who had anorexia with the significantly smaller number of fraternal twins who had it, scientists concluded that more than 50 percent of the risk for developing the disorder could be attributed to an individual's genetic makeup. A few small studies have even isolated a specific area on the human genome where some of the mutations that may influence anorexia exist, and now a five-year, $10 million NIMH study is underway to further pinpoint the locations of those genes.

Amy Nelson, 14, a ninthgrader from a Chicago suburb, thinks that genes played a role in her disease. Last year Amy's weight dropped from 105 to a skeletal 77 pounds, and her parents enrolled her in the day program at the Alexian Brothers Behavioral Health Hospital outside Chicago. Over the summer, as Amy was getting better, her father found the diary of his younger sister, who died at 18 of "unknown causes." In it, the teenager had calculated that she could lose 13 pounds in less than a month by restricting herself to less than 600 calories a day. No salt, no butter, no sugar, "not too many bananas," she wrote in 1980. "Depression can run in families," says Amy, "and an eating disorder is like depression. It's something wrong with your brain." These days, Amy is healthier and, though she doesn't weigh herself, thinks she's around 100. She has a part in the school play and is more casual about what she eats, even to the point of enjoying ice cream with friends.

Scientists are tracking important differences in the brain chemistry of anorexics. Using brain scans, researchers at the University of Pittsburgh, led by professor of psychiatry Dr. Walter Kaye, discovered that the level of serotonin activity in the brains of anorexics is abnormally high. Although normal levels of serotonin are believed to be associated with feelings of well-being, these pumped-up levels of hormones may be linked to feelings of anxiety and obsessional thinking, classic traits of anorexia. Kaye hypothesizes that anorexics use starvation as a mode of self-medication. How? Starvation prevents tryptophane, an essential amino acid that produces serotonin, from getting into the brain. By eating less, anorexics reduce the serotonin activity in their brains, says Kaye, "creating a sense of calm," even as they are about to die of malnutrition.

Almost everyone knows someone who has trouble with food: extremely picky eating, obsessive dieting, body-image problems, even voluntary vomiting are well known. But in the spectrum of eating disorders, anorexia, which affects about 2.5 million Americans, stands apart. For one thing, anorexics are often delusional. They can be weak with hunger while they describe physical sensations of overfullness that make it physically uncomfortable for them to swallow. They hear admonishing voices in their heads when they do manage to choke down a few morsels. They exercise compulsively, and even when they can count their ribs, their image in the mirror tells them to lose more.

When 12-year-old Erin Phillips, who lives outside Baltimore, was in her downward spiral, she stopped eating butter, then started eating with chopsticks, then refused solid food altogether, says her mother, Joann. Within two months, Erin's weight had slipped from 70 to 50 pounds. "Every day, I'd watch her melt away," Joann says. Before it struck her daughter, Joann had been dismissive about the disease. "I used to think the person should just eat something and get over it. But when you see it up close, you can't believe your eyes. They just can't." (Her confusion is natural: the term anorexia comes from a Greek word meaning "loss of appetite.")

Anorexia is a killer--it has the highest mortality rate of any mental illness, including depression. About half of anorexics get better. About 10 percent of them die. The rest remain chronically ill--exhausting, then bankrupting, parents, retreating from jobs and school, alienating friends as they struggle to manage the symptoms of their condition. Hannah Hartney of Tulsa, Okla., was first hospitalized with anorexia when she was 10. After eight weeks, she was returned to her watchful parents. For the last few years, she was able to maintain a normal weight but now, at 16, she's been battling her old demons again. "She's not out of the woods," says her mother, Kathryn.