You'd think Ivy Silver, of all people, would have seen it coming.
After all, she'd been bulimic herself years earlier. She knew all about the vomiting and chapped lips, the brittle hair and callused knuckles. And oh, the secrets.
But the Rydal businesswoman, now 50, was caught flat-footed in 2003 when her daughter's friends confided their fears that Rachel, then a high school junior, had an eating disorder.
"Of all the families, you'd think I would've known," Silver says.
Silver was one of several family and patient advisers to the nonprofit ECRI, which on Saturday launched a bulimia guide and Web site (www.bulimiaguide.org). The bizarre eating disorder affects millions of Americans, more than 90 percent of them women, including American ice dancer Jamie Silverstein who overcame her illness to return to Olympic competition last week.
ECRI, formerly the Emergency Care Research Institute, is a 40-year-old health services research agency based in Plymouth Meeting. Its bulimia guide, funded by a $300,000 grant from the Hilda and Preston Davis Foundation, provides everything a person needs to know - from how to recognize the problem in a loved one to how to evaluate insurance plans and treatment options.
This is not dumbed-down medical information. The guide is the result of two years of original research, which meant talking to bulimic patients and their families and friends, and evaluating everything from best treatments to insurance plans. The result is what ECRI calls the first of its kind - a systematic guide through the bulimia labyrinth of diagnosis, treatment and finding care.
"It's a messy web to navigate on your own," says ECRI's Diane C. Robertson, who wrote much of the guide.
The term bulimia is derived from the Greek boulimia, meaning ravenous hunger. Though bulimic-like eating habits were noted as early as the second century by Roman author Aulus Gellius, it wasn't till 1979 that bulimia nervosa was defined as a distinct syndrome.
Characterized as a mental health disorder, bulimia comprises binge eating followed by "compensatory behavior" to prevent weight gain. That includes self-induced vomiting, which can cause sore lips and knuckles; fasting; excessive use of enemas, laxatives or diuretics, and compulsive exercise.
Bulimia is far more common than anorexia nervosa, another eating disorder that involves endless dieting to the point of starvation. Some patients, like Silverstein, have both diagnoses.
Eighteen months after Silverstein and her partner won the 1999 world junior championships, she withdrew from the skating world to deal with her eating problems. She didn't skate for four years. Last week, in one of the more heartwarming stories of the Olympics, she and partner Ryan O'Meara, both 22, finished 16th in the ice dancing competition.
She described her comeback as "a huge victory for me."
Though calculations are hard because of the secrecy involved, it's estimated that up to seven percent of women in the United States have had bulimia nervosa at some point, about one percent at any given time. It's often accompanied by obsessive-compulsive behavior, depression or substance abuse and it can have devastating effects on the body.
Researchers now know that it's not just upper middle class white teenagers and young women who are affected. That stereotype, like so many in medicine, grew out of the fact that bulimia studies often were done at universities and clinics where that group was overrepresented.
Now it's clear that males, minorities, women in their 40s and 50s, athletes and immigrants newly buffeted by this nation's preoccupation with thinness also suffer from the disorder. "But they weren't included in the studies, they weren't diagnosed and on the radar, and they didn't get care," Anderson says.
What's less clear is bulimia's cause, whether unhappiness over body image, brain chemistry or a combination of societal pressure to be thin, relationship problems and depression.
The ECRI report lists risk factors, such as anxiety, perfectionism and past physical or sexual abuse, and warning signs, which dentists often discover first because constant vomiting can erode tooth enamel and increase cavities.
Bulimics have a strange relationship with food, skipping meals, changing food likes and dislikes, making excuses not to eat. To make vomiting easier, they may drink lots of water and diet soda, take small bites and chew excessively.
But what seems so obvious in retrospect is easily missed in the here and now.
Silver secretly binged and vomited, sometimes five or six times a day, from age 14, when her beloved father died suddenly, to age 19, when she was in a bad car accident. No one ever suspected anything was wrong.
"And why would they?" she says. "I'd sit down and eat a pound of cookies or my girlfriends and I would eat a whole cake. Those were considered normal eating habits."
She was a popular straight-A student, a competitive swimmer and tennis player who, everyone assumed, could down a lot of calories in a day and burn them off.
The accident changed her life. "I realized I was meant to live, that life had to change," says Silver, who started therapy to deal with her fears and feelings of abandonment by her father.
Still, she told no one about the bulimia - not even her therapist or husband Steven Leshner - until she was 30. Her daughter Rachel and son Robert eventually knew of her struggle, too, which made the realization that her daughter was similarly stricken especially wrenching.
After five days of denying she had a problem, Rachel agreed to get treatment. Now 19 and a busy freshman at the University of Miami, she declined to be interviewed. But she and her mother, in 2004, started A Chance to Heal (www.achancetoheal.org), a nonprofit foundation that raised $107,000 in its first year. They hope to promote awareness of bulimia and support patients who lack the means for treatment.
Even with insurance, patients face obstacles. For example, plans that offer 30 days of inpatient treatment typically allow only a few days, with similar restrictions placed on outpatient visits. The result is a revolving door of patients bouncing in and out of treatment, which is ineffective and more expensive in the long run.
"It's a huge problem," says Denise Lensky, program director at the Belmont Center for Comprehensive Treatment in Philadelphia, a private psychiatric hospital that treats eating disorders. Lensky was an adviser for the ECRI guide, which includes information on insurance and treatment.
Stephen J. Tregear, ECRI's special projects director, analyzed the clinical data for different bulimia treatments. He concluded that while cognitive behavior therapy - the standard treatment, along with medication - may work, it hasn't yet been proved with sufficient scientific rigor.
Cognitive behavior therapy, which typically lasts four or five months, focuses on learning first to resist the urge to binge and purge, then to eat normally and finally, to adopt strategies to prepare for possible setbacks.
"Now, everyone assumes this treatment is proven without a doubt," Tregear says, "but hang on a minute. It may not be as clear-cut as it seems."
While some bulimic patients struggle for a lifetime, many do just fine after treatment. Ivy Silver is thriving. And, so far, Rachel is, too.
"She's going to be great," says her mother.
How to Be Supportive
Do:
Don't:
SOURCE: Bulimia Nervosa: Resource Guide for Families and Friends, ECRI
For more information, go to http://www.bulimiaguide.org
