Eating Disorders: A Hidden Epidemic
Get Real: Unmask the Problem

By Karen Reed-Matthee

Article Contents:

  • Early Intervention

  • Genetic Links

  • Warning Signs

  • Parents' Role in Prevention

  • A Supermodel's Secret Struggle

  • Hurdles to Recovery: How Health Policies Impede Treatment

  • Resources

  • Most parents today regard drugs, alcohol and unprotected sex as major menaces to the health and safety of their adolescents. But few would consider a daughter's desire to go on a diet as a potential jumping off point into the downward spiral of disordered eating - even starvation. But parents should treat a child's decision to diet as seriously as if she - and sometimes he - indicates a willingness to experiment with drugs or take steroids to boost athletic performance, says Dr. Craig Johnson, director of the nationally recognized eating disorders program at Laureate Psychiatric Hospital and Clinic in Tulsa, Oka. "Be very careful about kids going on a diet at all," Johnson warns. "Dieting alters neurochemistry, sometimes in ways that may provoke anorexia or bulimia."

    There are many reasons - some just recently discovered - for Johnson and other medical professionals across the country to sound the alarm around the eating disorders of anorexia nervosa, bulimia and binge eating.

    "It's a hidden epidemic," says Lynn Grefe, CEO of the Seattle-based National Eating Disorders Association (NEDA). "Everybody has a story to tell. It's more widespread than is known." NEDA is a nonprofit organization that provides programs, products and services aimed at preventing, treating and finding a cure for eating disorders. Statistics compiled by the association show that as many as 10 million girls and women, and 1 million boys and men, in the United States are struggling with eating disorders. Because of the secretiveness and shame associated with these illnesses, many more cases go unreported. The average age of the sufferer is dropping rapidly, with peak onset among girls at ages 11 to 13. And often no one, not even their families, suspects a problem, sometimes for years.

    "Eating disorders have the highest mortality rate of any mental illness," says Grefe. In recent years, there has been progress in making women feel better about their bodies, experts say, citing the success of plus-sized actresses Queen Latifah and Sarah Rue (of TV's Less Than Perfect) and the 2002 release of the film Real Women Have Curves as examples. Yet, nearly half of American girls between first- and third-grade say they want to be thinner, and four out of five 10-year-old girls are afraid of being fat.

    Grefe, whose daughter has an eating disorder, says NEDA is focusing now on alerting the public, including families and lawmakers, to the dangers of eating disorders, instead of concentrating solely on treatment needs for sufferers. "We need to get the message out there that this is a potentially lethal disease," she says.

    The Importance of Early Intervention
    A big benefit to raising public awareness about eating disorders is early intervention. The sooner parents recognize the symptoms, the sooner the child goes into treatment, which can shorten the rate of recovery significantly and increase chances for survival. Roughly two-thirds of patients with anorexia or bulimia will recover in one to three years if the illness is diagnosed early and they receive quality care, says Johnson. The other third may take seven to 10 years to get well, and about 25 percent of those patients will die.

    While Johnson estimates 80 percent to 90 percent of patients will recover from anorexia or bulimia, Dr. Doug Bunnell, director of the Renfrew Center of Southern Connecticut, a treatment facility for sufferers of eating disorders, believes a lesser number - 70 percent - are likely to recover.

    "There's a bit of a controversy about how to read the outcome data," says Bunnell, who is also co-president of the NEDA board of directors. "Dr. Johnson is quite an optimist; the rest of us are a bit more pessimistic."

    Both agree, however, that patients who begin treatment in the early stages of an eating disorder have a much better chance at a normal, healthy life.

    "We were incredibly lucky, we intervened so quickly," says Catherine Mullally, the other co-president of the NEDA board of directors. When Mullally's daughter was 13, she became withdrawn. "We were concerned and watching it, but not overly concerned," she recalls. In the summer of 1998, Mullally noticed her daughter had lost a great deal of weight, but the girl was "very resistant" to her mother's attempts to discuss it.

    "Like a lot of people my age, I didn't really have the language for it," Mullally says. "I was aware anorexia existed, but it felt very 'other.'"

    Then in September, while dropping her daughter off at school, Mullally realized the extent of the girl's illness. "She was wearing this short, short skirt, and I looked at her legs as she was walking away and thought, 'Oh my God!'"

    She immediately called the family pediatrician to verify that her daughter's weight recorded in May was nowhere near her current weight. "The school also called; they suspected my daughter had an eating disorder," Mullally recalls. "But I'd already had my epiphany. She went into treatment the next day."

    Mullally says her daughter was hospitalized for seven weeks "to teach her how to eat again" and stabilize her body weight. Then came seven weeks of outpatient care, which involved supervising the girl's eating during the day, followed by seven months of psychotherapy. Mullally happily reports that her daughter is now a college freshman and doing well.

    "Eating disorders are very complex; there's not a single root cause," she says. "On some levels, it's about control ... In the case of a kid who was feeling out of control, it was a way in which she could control something."

    Mullally's description of her daughter during her battle with anorexia - intelligent, perfectionist, struggling with puberty and depressed - is typical of those most vulnerable to eating disorders, experts say. Research also indicates that children who are very anxious and cautious are at high risk for the illnesses, Johnson notes.

    Mullally believes environmental factors contributed to her daughter's illness. Because she was a single mother working hard at the time, she was not as present in her daughter's life as she would have liked. Also, her daughter attended a private girl's school, where "the richest and the thinnest wins," she says. And, as the girl was losing weight, "intelligent, well-meaning people would tell her how great she looked," her mother recalls.
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    Genetic Links and Other Factors

    Heredity may also put children at risk for eating disorders, according to recent research. Early results from a $12 million international study sponsored by the National Institute of Health indicate that anorexia nervosa in particular is as inheritable as other mental illnesses, such as depression, anxiety or schizophrenia, Johnson says.

    Children who have relatives with anorexia are 10 to 12 times more likely to have the illness, and bulimia is four to five times more likely to occur in children who have relatives with the disease, Bunnell notes.

    When enough risk factors are in place, big changes - such as puberty or starting college - can trigger an eating disorder.

    "Girls can reverse puberty, whereas guys cannot," Johnson says. When a girl's body fat falls below 17 percent, she will stop menstruating, and her hormone levels will revert to what they were before puberty. "If puberty is an overwhelming event for them, intuitively they know that if they lose weight, it reduces some of the complexity they're having to deal with in their lives," he says. "That's probably why many more girls have eating disorders than boys."

    While anorexia and bulimia predominantly affect young women (about 90 percent of cases), a growing number of boys are coming forward to admit that they too struggle with these illnesses, Johnson says. Males, he adds, account for upwards of a third of the population suffering from binge eating disorder.

    Unlike boys, girls need to put on fat during puberty in order to menstruate. Between the ages of 11 and 14, they should gain 40 pounds, says Johnson. "That's the norm. So parents need to be careful, he cautions, in this culture that places enormous value on thinness, not to make their daughters feel overweight.

    As the average age of puberty lowers and the period of adolescence extends, Johnson adds, the age of onset lowers and the period of risk lengthens for developing eating disorders. Bunnell says the Renfrew Center has treated girls as young as 14 and women as old as 65. "We have women in their 30s who have been sick for 15 or 16 years coming in for the first time, often because they want to become pregnant," he adds.
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    Easting Disorder Warning Signs
    There are numerous red flags for eating disorders, and many are the same as for drinking or drug use, Johnson notes. Withdrawal from friends and family, which Catherine Mullally observed in her daughter, is one. Other symptoms are:

  • dramatic mood shifts
  • dieting
  • substantial weight loss
  • overexercising
  • and, in the case of bulimia, hoarding food and visits to the bathroom after meals. Johnson advises parents who suspect a problem to watch for:
  • daily weighing
  • phobic avoidance of certain food groups
  • increasingly ritualized behavior with food
  • inability to sit still (in an attempt to burn calories) and
  • fanatic exercising, despite illness or bad weather.

    There's also bound to be an increasingly frantic denial that anything is wrong, he says. For parents to catch an eating disorder early, they have to be "sensitive to signs from the get go," says Lynn Grefe. "Look at how we eat; families are so on the run. I'm not sure parents are always aware of how their kids are eating."

    Most important, she says, parents should not focus on their children's appearances, or even comment negatively on their own bodies in front of children.
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    Parents' Role in Prevention

    Psychologist Dr. Michael Levine, a noted researcher in the field of eating disorders, has compiled a list of pointers for NEDA to assist families with prevention. (It can be viewed in full at He encourages parents to examine their thoughts and behaviors toward their own bodies and how those beliefs have been shaped by sexism and cultural attitudes about weight. Beware of overemphasizing beauty and body shape, particularly for girls, he advises.

    Levine suggests exercising for the joy of feeling your body move and become stronger, not to purge fat. In addition, parents can educate children about the dangers of trying to alter body shape through dieting and stress the importance of eating a variety of foods in well-balanced meals at least three times a day. All foods, he emphasizes, can be eaten in moderation; avoid labeling food as good or bad. Unless a physician requests it, don't limit a child's calories.

    Also, parents should help children appreciate and resist the ways in which TV, magazines and other media imply that a slender body means power, excitement, popularity or perfection, Levine says. Do whatever you can to promote the self-esteem and self-respect of girls and boys alike in intellectual, athletic and social endeavors. A well-rounded sense of self and solid self-esteem, he notes, are perhaps the best antidotes to disordered eating.
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    Anna Westin Foundation - 952-361-3051,  - Provides education and advocacy for the treatment of eating disorders.

    TRONG>Eating Disorders Coalition - 202-543-3842,  - Works to improve care and funding for eating disorders at the federal level. TRONG>  - Offers books and other materials on eating disorders for purchase. TRONG>

    Harvard Eating Disorders Center - 617-726-8470,  - Established under the leadership of David B. Herzog, M.D., as an affiliate of Harvard Medical School, the center's focus is to expand knowledge about eating disorders, their detection, treatment and prevention.

    TRONG>National Association of Anorexia Nervosa and Associated Disorders - 847-831-3438, - Provides hotline counseling, a national network of free support groups, referrals to health-care professionals, and education and prevention programs to promote self-acceptance and healthy lifestyles.

    TRONG>National Eating Disorders Association (NEDA) - 206-382-3587, - Sponsors outreach programs, offers treatment referrals, advocacy and informative literature. Call the NEDA Information and Referral Helpline at 800-931-2237.

    TRONG>The Renfrew Center Foundation - 877-367-3383, - Develops and implements programs to advance awareness of eating disorders and related issues and provides financial assistance to women unable to afford treatment.

    Looking for local support? Contact your local hospitals and medical centers about programs and support groups. Also, visit our local Web sites to find support groups in your area. Contact your local hospitals and medical centers about programs and support groups.

    Karen Reed-Matthee is a freelance writer and a former editor for United Parenting Publications.

    February 2004

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