Nov. 26, 2008 -- An 11-year-old girl in Mumbai, India, was hospitalized with pain in her stomach, and surgeons were forced to operate. What they found was a foot-long hairball.
The mass of hair -- known as a trichobozear - -is a potentially fatal result of a mental illness called trichotillomania, a condition in which the patient pulls her hair out and, in many cases, eats it. And while the condition is not well known, American doctors say that it may afflict 1 percent of all Americans.
"It's a fairly uncommon outcome for trichs," said Dr. Martin Franklin, associate professor of clinical psychology and psychiatry at the University of Pennsylvania, who studies trichotillomania in children and adolescents. "But it's pretty life-threatening if you do end up here."
While he notes that most who have trichotillomania do not eat their hair after pulling it out, he said this extreme form of the condition occurs in between 30 and 50 percent of patients.
"Certainly when you eat enough of your hair to require surgery, we're at the other end of the continuum," said Martin.
Trichotillomania often begins in early childhood, and can start as young as 18 months, although it typically doesn't begin until age 10. A person with the illness compulsively pulls out ther hair (between 70 and 93 percent of patients are estimated to be women).
Among adult patients, most have the condition starting in childhood, but in many cases it may go unreported, said Dr. Darin Dougherty, a psychiatrist and co-director of the Trichotillomania Clinic at Massachusetts General Hospital.
Patients often exhibit other repetitive behaviors, because of the disease's similarities to obsessive compulsive disorder.
"People with trich often have other repetitive bodily focused behavior," he said. "In addition to pulling their hair, they also chew on their nails or the inside of their cheek."
Dougherty estimates that with intervention ranging from behavior therapy to medication, 60 to 80 percent of patients can be effectively treated.
But while the condition is usually nonfatal -- most of the effects come from social problems resulting from bald patches -- doctors say those interventions are crucial.
Christina Pearson described her 20-year ordeal as a painful period of thinking she was alone, "thinking I was the world's biggest freak."
For her, pulling her hair out and then chewing on the root (which doctors say is typically not enough to result in an accumulation of hair in the stomach) was an irresistible compulsion.
"I used to cry watching my hand go to my head, and there were times in my 20s that I would tie my hands together."
Ultimately, Pearson learned more about her disorder and got help. Eighteen years ago, she founded the Trichotillomania Learning Center, where she is now executive director, educating people about the condition to prevent the problems she had.
"There's not a lot of thought involved in this. It's more like scratching an itch. It's more like chewing gum," Pearson said. "It would induce a trance for me that would last for hours, and then the next day I would be absolutely traumatized.
"You cannot imagine why you're doing this and why you can't stop. It doesn't make sense."
While cases like the one in Mumbai are not common among trichotillomania sufferers, several occur every few years and they can be fatal when they result in bowel obstruction.
Last year, Dr. Sri Komanduri, a gastrointestinal surgeon then at Rush Medical Center in Chicago and now at nearby Northwestern Memorial Hospital, removed a 10-pound mass of hair from an 18-year-old woman, writing an account of it in the New England Journal of Medicine.
"Essentially, the entire stomach was kind of engulfed with this thing," he told ABCNews.com.
While people often swallow unusual objects such as coins, Komanduri said that the mass of those objects keeps them from accumulating in the stomach.
"Things like hair don't have much substance or weight to them, and they tend to pool," he said.
He noted that surgery was not the typical solution for patients, as most of the hair accumulations could be removed by pushing it out during an endoscopy or using other nonsurgical techniques.
He said that in the past 10 years he has seen five cases of hair accumulation in the gut, but this was the first time surgery was needed. He also noted that the masses of hair are not typically found until some other problem forces doctors to look in the stomach.
Psychological Illness and Depression
In the vast majority of cases, the effects are psychological. Patients are ashamed of their behavior, and depression can result -- although doctors are not sure whether it is caused by the trichotillomania itself or by the problem in the brain that leads to the illness. The condition can also leave patients with bald spots or repetitive stress injuries.
But even with those effects, people with the disease are reluctant to come forward.
Franklin explains the mindset of many children as "I know I'm doing something that's unusual, I'm ashamed of it, I don't want to tell anybody."
But by observing their children to see if they pull out hair excessively and by laying out the complications of excessive hair-pulling, he said parents can go a long way toward helping.
But, Franklin added, they need to avoid sounding accusatory.
"You won't get an accurate answer from a kid who feels stressed out and on the spot when you ask those questions," he said.
But Franklin notes it isn't easy. He said he has seen cases of a husband and wife where the husband was unaware that his wife was pulling out her hair while he was asleep.
Dougherty notes that many cases are not identified by the parents but are caught by the dermatologist when the parents bring their children in worrying about hair loss or a potential skin problem.
Doctors say that parent awareness is the key to helping children with trichotillomania, and they can benefit by more media attention, spotlighting a potentially embarrassing but not uncommon condition.
"There's a lot of shame and a lot of reasons kids want to keep it to themselves," said Franklin. "This is fairly common and treatable, and something that's not so shameful."
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