As a third grader, Judy Brown watched with wonder as her teacher systematically pulled out her eyelashes betweenlessons. Judy went home and tried to pluck out her own eyelashes, curious whether it could be done and how it might feel.
That innocent fascination led to a full-blown case of trichotillomania, a little-known but emotionally crippling disorder in which sufferers pluck out their eyelashes and eyebrow and scalp hair, often until very little remains.
Trichotillomania often begins between 10 and 12 years of age, a vulnerable time for children beginning their trek toward adulthood.
“When you’re a kid, you want to fit in. I really didn’t. I looked like I had cancer,” says Judy, now a 17-year-old Springfield resident.
Trichotillomania’s onset can be accompanied by a stressful event, such as a parent’s death or a change of schools, but it also can begin as innocuously as Judy’s disorder started.
Judy has taken a measure of control over “trich,” as many who have the disorder call it, through behavior therapy. The approach teaches sufferers to create structured methods of keeping tabs on the symptoms that lead to the pulling, then to introduce other, less destructive habits.
Judy kept a box of toys, full of stress-relieving balls and other comforting objects, as one way to keep her hands occupied and her thoughts away from pulling.
She credits her progress to Charles Mansueto, a trichotillomania specialist and director of the Behavior Therapy Center of Greater Washington D.C., in Silver Spring.
Mr. Mansueto says researchers have just begun to study the disorder, and much about its causes and treatments remains a mystery.
Toddlers occasionally develop the disorder, only to outgrow it, Mr. Mansueto says.
Others aren’t so fortunate.
“There’s probably a biological vulnerability that exists that may predispose some to trichotillomania,” Mr. Mansueto says, adding that the cause involves “a complex array of experiences and biological predispositions.”
He estimates that 2 to 3 percent of the population has battled the disorder at some point, but that figure may not be accurate, given the tiny body of research compiled so far.
“Our data is really not excellent simple questions like, ‘How many people have it?’ We have to hedge a bit,” he says.
The disorder’s impact, though, isn’t up for debate.
“We have to acknowledge it has the potential to be a deeply entrenched problem that can spoil lives,” he says.
Some of its physical effects also can be permanent, Mr. Mansueto says. Repeatedly pulling out hair can damage the follicles, or hair roots, causing scarring and infections. In rare cases, the hair will never grow back.
Generally, the hair will return even after years of damage, though eyebrows are less likely to regenerate. The returning hair may be a slightly different color or texture.
Treatment typically involves medication, behavioral therapy or a combination of the two. Medication, involving drugs similar to those given to people with depression such as Prozac, Zoloft and Paxil haven’t shown long-term efficacy, Mr. Mansueto says, and in some cases cause deleterious side effects, such as extreme drowsiness.
For some patients, the medication lowers stress levels, which can have the benefit of decreasing hair-pulling if stress is a contributing factor.
Behavior therapy differs for each patient, in part because the triggers and situations involving each hair-puller are different, requiring a customized approach.
Dr. Philip Ninan, professor of psychiatry at Emory University in Atlanta, says the term “trichotillomania” was coined more than 100 years ago from “trich,” meaning hair; “tillo,” meaning pull; and “mania,” meaning madness. Yet significant interest in trichotillomania did not begin until the late 1980s.
Dr. Ninan says about nine in 10 people with the disorder are women, though men may camouflage its effects by blaming male-pattern baldness.
“You can have normal baldness on the scalp. That’s more societally acceptable,” he says.
The social stigmas of hair pulling are far worse for women, he says.
“We have a society where perception is everything,” he says. “Hair is associated with beauty in women.”
Part of the shame hair pulling fosters stems from the perception that pulling should be under a person’s control. Those who can’t stop themselves perceive themselves as failures and internalize that defeatist attitude.
Recent research hints at a biological root to the disorder, Dr. Ninan says. Magnetic Resonance Imaging (MRI) tests completed on patients with trichotillomania have shown areas in the brain that in trichotillomania sufferers seem to be smaller in size.
Judy doesn’t mind telling others about her ordeal.
“Now, I can talk about it,” she says of her disorder. “I want people to know about it.”
Several people with trichotillomania contacted for this story preferred to use pseudonyms. Shame arguably is the disorder’s most devastating side effect.
Alexandria resident “Mary” says her 16-year-old daughter, “Jane,” developed the disorder during a particularly stressful time at school. Once established, the disorder struck at random, during periods of stress and times of tranquillity.
“When she was less busy it was worse,” Mary says. “She couldn’t read the Sunday comics without pulling out her hair.”
Jane wore gloves while studying, put bandages on her fingertips to impede her pulling and buried herself in school athletics as a distraction.
“It didn’t go away, but it seemed to get under control,” says her mother, who bristles when recalling her daughter’s struggles. “I cannot tell you how frustrating it is.”
“She said to me she’d rather have cancer,” Mary recalls of her daughter’s struggles. Then, she says her daughter reasoned, she would have an excuse for the bald spots peeking through her hair.
“Melissa,” 24, of the District, recalls how she started pulling her hair as a 16-year-old student in chemistry class.
“It was a horribly boring class,” she says. “My finger wandered up to my eyebrow.”
For the first year, she only pulled at her eyebrows.
“I used to have thick, full eyebrows. I just said I had gotten them waxed,” she says of what she told people about the thinning hair.
Then she began plucking her eyelashes, then her pubic hair, before moving to her scalp. Now she fights daily to stop pulling from all four areas.
She describes the sensation leading up to pulling as “a ball of tension that’s about to explode in my belly.”
She takes two anti-depressant drugs, Effexor and Wellbutrin, to help stave off the temptation to pull, but their impact has been minimal. She also is working with Mr. Mansueto’s center and has had some initial success.
For now, she uses various hair coverings to hide several bald patches. She has considered buying a wig, but her family fears that would lead her to pull her hair more aggressively.
Yazmin Fuentes, a 22-year-old student at the University of Miami who began pulling out her hair a decade ago, doesn’t mind having her name associated with the disorder.
“One of the things that made it worse was hiding it, making up excuses for it,” Miss Fuentes says.
Miss Fuentes began when she was 12, pulling out her hair by accident while sitting in front of the television. “I saw what the root looked like. I became extremely interested in the structure, of how it looked,” she says.
Miss Fuentes says she has tried every medicine and therapy available, but nothing has worked.
“I’m starting med school next year, and I know it’s going to get really, really worse,” she says.
Fairfax County resident Cynthia, 46, began her hair pulling at 8, after her orthodontist yelled at her for not wearing her head gear.
“People think it’s like biting your nails, but you can’t stop it,” she says. “I’ve taken all the drugs, and they just don’t work,” adds Cynthia, who runs a support group in Northern Virginia for those with trichotillomania.
Though Judy’s trichotillomania is under control, the urge to pull hasn’t disappeared, and she doesn’t expect it to entirely.
“If I’m stressed out or bored, I’ll start thinking about [pulling],” she says.