Mindi Rold, an anorexia survivor, began dieting when she was 8. "Losing weight was an obsession," she said.
For years, her family searched for help. Their insurance company refused any treatment except hospitalization, and she spent more than 12 years in and out of hospitals. "I believed I deserved to be punished and didn't deserve food. The hospitals never worked at these underlying problems."
After years of failed treatment, an attempted suicide and a "lost childhood," Rold began her road to recovery in 1993 in a 12-step, inpatient program, she said. Today, at 27, she suffers from osteoporosis, fibromyalgia, stunted growth and has only a 20 percent chance of conceiving children.
Rold told her story at a July Capitol Hill briefing on eating disorders co-sponsored by the Eating Disorders Coalition for Research, Policy and Action and the Congressional Children's Caucus.
"This is a serious mental illness that has physiological consequences," said psychologist and coalition executive director Jeanine Cogan, PhD. "The important message is people are dying--eating disorders kill. The other important message is that there is help. There are people who survive."
Today, 8 million Americans suffer from eating disorders; approximately 90 percent of them are young women. Eating disorders have the highest mortality rate of any mental illness. And a growing number of younger children are suffering from an eating disorder.
At the briefing, several speak ers--including two congresswomen--drove home the message that eating disorders need more attention. Rep. Sheila Jackson-Lee (DTexas), said eating disorders are "an illness that we should be able to address and to cure." She vowed commitment from the Congressional Children's Caucus and commended the crowd of U.S. Senate and House staffers for attending the briefing.
"We shouldn't have any more lives lost, no more suffering," she said. "It's time to wake up America about eating disorders."
Susan Ice, MD, an expert in eating disorders and medical director of the Renfrew Center in Philadelphia, told briefing attendees of the rise in eating disorders. "The incidence of eating disorders has doubled since the 1960s and is increasing in younger age groups, in children as young as seven," she said. "Forty percent of 9-year-old girls have dieted and even 5-year-olds are concerned about diet," she noted.
Only a third of patients ever recover after an initial episode, said Ice. Another third fluctuate between recovery and relapse and a third suffer from chronic deterioration. She called for early detection and intervention, which boosts people's chances of recovery. Ice added that the treatment for eating disorders must be "as complex as the illness" and should include nutritional, medical, psychiatric and psychotherapeutic aspects.
The other panelists told moving stories of their personal experiences with eating disorders. Jamie and Terry Rustemeyer, the sister and mother of Melissa, whose bulimia led to her death at 18 in 1999, shared their grief and anger about Melissa's death. "Nothing makes me angrier than when someone says, 'Do I look fat?'" said Jamie. Terry called for more research and treatment. "Eating disorders can kill. Just ask me," she said grimly.
The Eating Disorders Coalition has identified several policy priorities, such as:
Increased resources for research, education, prevention and improved training.
Federal support for improved access to care. "Our No. 1 issue is mental health parity," said Cogan, "Every day I get a call from someone who can't get insurance to cover their treatment."
National awareness of eating disorders as a public health problem.
Initiatives that support the healthy development of children.
Joe Kelly, whose close friend and co-worker died of a heart attack after an 11-year battle with anorexia, summed up the purpose of the briefing. "There aren't enough voices yet; not enough voices are calling for society to change."
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