Isabelle Caro, a French model featured in an anti-anorexia advertising campaign, died at age 28 from unknown causes. Caro actually died last month, but the news wasn't made public until this week.
Caro suffered from anorexia from the time she was a teenager and made her struggle public in 2007 when she appeared in an ad for an Italian designer showing her naked, emaciated frame with the words "No. Anorexia."
Caro chronicled her battle with anorexia on her blog. In a magazine interview she published on her blog, she said her reason for making the ad was to draw attention to how debilitating the disease can be.
"I wanted to show, in its raw state, the full horror of anorexia," Caro said in a quote translated from French.
Specialists who treat eating disorders say Caro's untimely death sends the message she wanted to send to others while she was alive.
"I think it is so important that a high-profile death remind us of all of the less high-profile people who are struggling and dying," said Cynthia Bulik, director of the UNC Eating Disorders Program at The University of North Carolina at Chapel Hill.
Bulik and other experts say anorexia and other eating disorders are physically and mentally devastating. Treatment can be very intense and very difficult, and part of the challenge is that little is known about what causes the distorted body image that is characteristic of these disorders.
Caro talked about the serious physical toll anorexia took on her body. During one hospital stay, she was so sick she fell into a coma.
"If people are trying to control their weight using devious means, they can kill themselves if they purge themselves, take laxatives or starve themselves," said Dr. Richard Pesikoff, a professor of psychiatry at Baylor College of Medicine in Houston. "If you vomit up potassium, your potassium levels drop. Then you get cardiac arrhythmia, and multiple vomiting can lead to cardiac arrest and death."
"Anorexia nervosa is a serious biologically based mental illness with the highest mortality rate of any psychiatric disorder," said Bulik.
Treatment generally involves a team of specialists, including psychiatrists, psychotherapists, pediatricians or other general practitioners, and others. The intensity of treatment depends on how severe a person's illness is.
"For serious anorexics, food is medicine," said Pesikoff. "Food is non-negotiable."
Pesikoff added that an anorexic may be prescribed small portions of food so that a patient doesn't feel as if he or she has overeaten. In cases where a person refuses to eat, doctors will resort to feeding through a tube that goes from the nose to the stomach.
At the same time, experts may recommend individual counseling, group therapy or even residential treatment if there is a center available and a patient needs it.
"They need to learn alternative coping mechanisms to help deal with the emotions involved in these disorders," said Pesikoff.
"For youth, family based therapy has a growing evidence base behind it," said Bulik. "This is where the parents take over responsibility for feeding the child during the acute phase of the illness. It's called Maudsley family therapy."
Perhaps the biggest challenge is dealing with distorted body image, which can be extreme. Someone in the throes of anorexia may point out body fat to others, but in reality they are bony and undernourished.
"We know very little about the mechanism behind body image distortion," said Bulik. "We do know that there is a substantial genetic component but we do not yet know how those genes work to result in the disorder."
Because there are so many physical and psychological factors involved in anorexia and other eating disorders, recovery can be difficult.
"Once someone starts down the slippery slope of starvation, it simply spins out of control," said Bulik. "Even if the person wants to recover, it becomes enormously hard to eat and restore weight. The fear and anxiety underlying anorexia nervosa become paralyzing to recovery."
Caro's long struggle with anorexia emphasizes how pervasive a disease it is.
"Anorexia nervosa is not a phase," said Bulik. "Anorexia nervosa is not a choice. It needs to be taken seriously because, as Isabelle Caro's death underscores, it is serious."