Eating disorders: Still on the path to understanding

For nearly 40 years, Sharon Pikus hid what she calls her “dirty little secret”: After an adolescent case of whooping cough caused her to vomit everything she ate, she turned the experience into a trick to lose weight. 

“I was always a chubbette as a kid, so I said to myself, ‘This is terrific — I can eat whatever I want and throw it up,’ ” recalled Pikus, now 60.

She kept up the habit for decades, eventually having to hide it from her husband and children. Even as other parts of her life were in place — her family was happy, her business was successful — her bulimia lurked under the surface, an overwhelming compulsion.

“It is an obsession, like an addiction to food,” she said. “You can just go eat [and] eat, but you have to throw up, and then you have to mask it.”

For Nancy Malvin, problems with eating began when she was 13. She came home from school one day devastated by unexpected teasing from her classmates. The incident sent her on a downward emotional spiral, which she later recognized as the onset of her lifelong battle with anorexia.

“She began losing massive quantities of weight and lying about how much food she was eating,” her sister Jennifer Malvin, now 53, remembered.

For the next four decades, Nancy tried every treatment she could find, battling her disorder ferociously.

Eventually, her weight plummeted to a terrifying 60 pounds, and her body began to fail. In the last few years of her life, Jennifer says, Nancy needed a pacemaker. With no fat cushioning the soles of her feet, even climbing stairs became painful. Her teeth fell out, Jennifer said, and “she lost her beautiful hair.”

Nancy was not at a loss for information about her eating disorder. She understood what had triggered it, had been through massive amounts of therapy in an attempt to get well, and was brilliantly analytical and insightful. “She worked on herself all the time,” her sister said. “But she used to say, ‘At the plate, I can’t follow what my brain is telling me.’ ”

By the time Nancy died as a result of complications from her disease at 51, her liver had failed. Her husband came home to find her unresponsive on the floor, and paramedics were unable to revive her.

Doctors remain baffled by the psychological causes that make people like Sharon and Nancy turn outside events into rituals of starvation or binging and purging, but it’s a question that is in dire need of an answer — anorexia has the highest mortality rate of any psychological disorder, with anywhere from 4 to 8 percent of people who struggle with the disease dying as a result of it. Bulimia is not far behind; just fewer than 4 percent of those with the disease eventually die from complications.

There is, however, some good news: Researchers are making headway in understanding the roots of the disease. Eating disorders, they’ve discovered, likely begin with a certain gene or combination of genes. From there, external factors like family dynamics and cultural pressure trigger those genes into action.

In other words, said Lynn Grefe, president and chief executive officer of the National Eating Disorders Association, “You are born with the gun, and life pulls the trigger.”

It’s taken researchers many iterations of theory to get to this point. Years ago, for instance, it was widely believed that parents were the cause of eating disorders. Given that symptoms are most likely to appear during the throes of adolescence, experts believed that budding teenagers in families with exceedingly high expectations were cracking under the pressure of overbearing parents or societal pressures.

“In the olden days, we used to say that perfectionistic families, those that dealt poorly with conflict and those that weren’t willing to address disputes, were the families that anorexia would show up in,” said Dr. David Rosen, the chief of the teenage and young adult health section at the University of Michigan Health System. “There is less sense now that those family dynamics are as important — they play a role, but more in how [the disease] gets perpetuated over time than how it develops.”

Anorexia and bulimia were also once believed to be the sole province of successful, high-achieving affluent white girls — a prototype that easily applies to many Jewish girls. And while young women with those characteristics are not unusual patients to see, Rosen said, now “we see boys and people of color and of every socioeconomic background; eating disorders have become equal-opportunity illnesses.”

Another myth is that eating disorders are a byproduct of unrelenting advertisements and entertainment featuring impossibly thin women. While those images certainly aren’t a positive influence on girls, they also don’t single-handedly cause disease, said Cynthia Bulik, director of the eating disorders program at the University of North Carolina at Chapel Hill.

“It’s so convenient to have these face-value explanations; it makes sense [to people] that the media shows skinny people, and that must cause eating disorders,” she said. “It’s a simple explanation, but it’s an inaccurate explanation.”

The fact that eating disorders have genetic underpinnings has been accepted in the medical community for more than 10 years, after a number of studies were published that demonstrated a familial tendency toward the disease. One such study was published in the American Journal of Psychiatry in 2000. Researchers looked at 2,163 female twins, and by examining the women who were found to have anorexia, concluded that when it comes to the likelihood that someone will develop the eating disorder, genes play about a 58 percent role.

In the same year, researchers at UCLA and the University of Pittsburgh compared the likelihood that a relative of someone with anorexia or bulimia would also develop the disorder, compared to relatives of people without either disease. They found that among family members of participants with anorexia, the rate of the disease was 11.3 times as high as it was among relatives of healthy participants. For relatives of bulimic participants, the rate of bulimia was 4.3 times as high.

Researchers are using this information to guide them in their studies; many are now trying to pinpoint a specific gene or group of genes that these families have in common.

In the meantime, experts have been able to identify certain personality traits that might make people more susceptible to anorexia or bulimia. Individuals with both disorders tend to be obsessive or perfectionists, and many steer unusually clear of risk. Bulimics often have an added tendency toward impulsivity.