San Mateo mother who lost daughter to anorexia leads Washington rally

Sept. 30--SAN MATEO -- Nicole Schlesinger weighed 139 pounds when she began a calorie-counting diet plan in 1994, hoping to avoid the "freshman 15" when she started at UC Berkeley that fall. When she died nine years later from complications of anorexia, she weighed only 79 pounds.

The sensitive, intelligent young woman left behind a 2-year-old daughter and a grieving mother who decided to channel her pain into helping others. After losing her only child, Debra Schlesinger began volunteering at the Eating Disorder Resource Center in Los Gatos. In 2012, she formed her own support group.

On Tuesday, the 60-year-old San Mateo resident will take the fight against eating disorders to the nation's capital as an organizer of MOM, or the Mothers and Others March. Several hundred people will gather in Washington, D.C., to spread awareness of their cause and lobby elected officials for policies to combat eating disorders, from more research funding to better insurance coverage.

"When a child dies, you, the parent, have two choices: to survive or to die," Schlesinger plans to tell the crowd on the west lawn of the U.S. Capitol Building. "I chose to live to help others -- and in return it helped me."

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As many as 30 million Americans suffer from eating disorders, including anorexia, bulimia and binge eating, according to the nonprofit Eating Disorders Coalition. Anorexia is considered particularly deadly among mental illnesses, killing 5 percent or more of the people who suffer from it.

Nicole's "commander," as she dubbed her anorexia, didn't take hold until she was 18. But there were early warning signs -- behaviors Debra would have taken more seriously had there been more information available about anorexia at the time.

Always a picky eater, Nicole started taking food home from restaurants by the age of 9 or 10, not wanting to eat in front of other people. By middle school she was developing a poor self-image of her body, complaining that her belly wasn't flat enough.

In college she spiraled downward, developing an extreme diet and a punishing exercise routine. She was hospitalized nearly a dozen times over the next nine years, checking out each time against the advice of doctors.

Debra recalls feeling powerless to help her daughter. Every day she prayed she would see Nicole sign onto AOL Instant Messenger in the morning.

"I could see her screen name come online," she said through tears, "so I knew she that she lived another day."

Nicole died in her sleep of heart failure in 2003. Her daughter, now 13, lives in Chicago with her father.

Through her support group, Mothers Against Eating Disorders, Debra is advocating for more money to be spent on research into what causes eating disorders as well as how to treat and prevent them. The National Institutes of Health spent $28 million on eating disorders in 2011, compared with $276 million for schizophrenia and $160 million for autism, according to the National Eating Disorders Association.

Advocates also say that, while insurance coverage of eating disorders has improved in recent years, policymakers in Washington can do more to compel insurers to provide comprehensive coverage, including residential treatment.

In addition, Schlesinger's partners, including the Eating Disorders Coalition, are concerned about the cultural impact of magazine photos that are digitally altered to erase the flaws and distort the proportions of celebrities' bodies. They want Congress to study requiring advertisements using altered images to come with a disclaimer.

The causes of anorexia remain somewhat murky, but it's clear there is a strong genetic component, according to Dr. Stewart Agras, a Stanford University psychiatry professor emeritus who has studied eating disorders.

Anorexia is difficult to treat, Agras said, but the odds of success are higher if the disease is caught early, before its habits are too deeply ingrained. Recent research indicates that family therapy is more effective than individual therapy.

One of the speakers at Tuesday's march will be Kitty Westin, a Minnesota woman who became a pioneer in the fight against eating disorders after losing her daughter Anna in 1999. The movement has come a long way, she said, but more needs to be done -- there are still people, for instance, who view eating disorders as a lifestyle choice, not a biologically based disorder.

"I love that this march is happening," said Westin, "because to me it's a sign that there's this next generation now that will have a voice and do this advocacy and will keep talking about it until all the issues are addressed."

Contact Aaron Kinney at 650-348-4357. Follow him at Twitter.com/kinneytimes.

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