The key to successful treatment is recognizing the symptoms early, according to Lynn Grefe, founder and director of the New York-based National Eating Disorders Association.
"The longer the person has an eating disorder, the harder the recovery," she said.
The illness is biological, but the triggers are social: trauma, divorce, even a throw-away comment like, "Aren't you a chubby little girl," said Grefe. "You are born with the gun, but life is the trigger -- and there are a lot of them."
When children are identified early, there is hope, she said. "I see children 11, 12, 13 and their parents still have control and can make decisions about their treatment and are not scared to take action. There are wonderful results."
But Grefe said she works with women in their 30s who are in and out of treatment. "It's a way of life," she said. "They are just surviving."
Such was the case with Mary Polan, who was diagnosed with an eating disorder at the age of 10 when her pediatrician noticed she wasn't gaining weight.
"We thought it was a phase she was going through," said her father, Mike Polan, a physical education teacher from Westhampton, N.Y. "It was Lent and people were giving up things and she gave up junk food -- and it took off from there."
Mary, like other children was a "hard-wired perfectionist," said her father. "But there was nothing we could put our finger on."
Now 21, Mary has had several hospitalizations and has been in and out of treatment centers. At her worst in her teens, she weighed "in the high 80s" at 5-feet 8-inches tall, according to her father. "We tried everything we could as parents," he said. "You put the blame on yourself."
At one point she was on an IV and doctors "tried to put a tube down her nose," said her father, still shaken by the trauma. Polan wants others to know the seriousness of the illness.
"They can actually die from this," he said. "The key is early intervention -- the longer it takes to treat it, the worse it gets."
Most recently, Mary took a medical leave from college and will go back out to a treatment center in California, where she had done well previously. "It's difficult -- she's 3,000 miles away," said Polan. "But as a parent, you beg, borrow and steal the money if it will fix it."
Sophie's mother Anne knows the feeling of desperation. But today, at 8, her daughter is doing well. The physical symptoms of malnourishment are gone.
"She's got a little padding so when she got the stomach flu you don't have to worry that she'll lose a couple of pounds and fall down the rabbit hole again," said her mother. "She runs and plays, but the compulsive exercise is gone."
Sophie still has supervised eating, even at school where aides oversee her intake. Without monitoring, Sophie slips back into food restricting.
Pediatrician O'Toole recommends keeping children supervised for years and not giving back eating control. "It doesn't have to be invasive," said Anne, "but you do it for the long haul."
It's hard for a parent not to blame themselves, said Anne. "I didn't think she looked skinnier than the other kids and it just wasn't on our radar if she hadn't told me. … But she knew she was sick."
But O'Toole said there is reason for hope, and neither parents nor children should be ashamed of their eating disorder.
"The more you understand about anorexia, the more you understand it conceptually as a brain disorder, and that is empowering," she said. "It's not a character flaw or a parenting issue or dysfunctional relationship. It's the luck of the draw."
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