When Nicole Santamorena was a baby she pulled her hair for comfort when she was distressed or sick. But that coping mechanism eventually escalated into pathological grooming behavior so serious that she was bald by middle school.
"I had to wear a hair piece and a bandana," said Nicole.
Today, the 17-year-old from Putnam, N.Y., still fights the urge to pull out hair, but therapy, a good support group and even Internet friends with the same compulsive behavior have all helped.
Medical experts are baffled by these behaviors. But now they are giving more scrutiny to pathological groomers, those with dermatillomania [picking scabs], trichotillomania [pulling hair] or even simply nail biting.
"The problem is we don't have data -- it's not something we collect because we always thought of these behaviors as benign," said Dr. Nilay Shah, a neurologist and medical director of the Integrated Medicine of Mount Kisco, N.Y.
"It's common enough to see 20 or 30 percent of all kids at some point along a spectrum that we call pathological, but other than that it's a wild guess."
Soon, all of these repetitive habits will be included in the American Psychiatric Association's DSM-V or the latest Diagnostic and Statistical Manual of Mental Disorders under the broader category of obsessive compulsive disorder (OCD).
"That's a great thing," said Shah, who treats Nicole for other health issues.
"The beauty is that a categorization in the DSM-V gives it a whole new light," he said. "And the research institutions can have a unified definition and approach that will lead to drug company and NIH funding."
Doctors know that OCD is a spectrum of disorders. Compulsive hand washers and germaphobes exhibit repetitive behaviors as a kind of magical thinking to ward off something bad happening.
Pathological groomers like Nicole, on the other hand, derive stress relief and pleasure from their tics.
"There is a sensation I get before I pull," Nicole said. "It's like a pulsating scalp and if I don't pull, it doesn't go away. It's kind of a compulsion."
Studies suggest that the behavior is also genetic. Nicole's mother picks her skin scabs and her father bites the hair from his knuckles.
"When you look at the brain wave activity, it does correspond with obsessive compulsive disorder," said Shah. "We know consciously that it's not right or logical or reasonable, yet cannot help doing it. And for a brief moment it feels better -- there's a release."
Researchers speculate that on a microscopic level, the signals or neurotransmitters in the brain are involved and often use antidepressant medications to help treat these behaviors.
"Some circuitry in the brain has gone a little off," said Shah.
Colleen, a 29-year-old from South Carolina, has scars on her legs and bloody scabs on her head caused by repetitive picking and scratching.
At first, only family and close friends knew that she was a pathological groomer, but soon her hairdresser and even professional colleagues began to notice.
"I always stop because I know they are grossed out by the fact I do it," said Colleen, who was too embarrassed to reveal her last name. "I have scars all over my ankles from the mosquito bites I pick. Eventually they fade, but it still doesn't look good in a professional setting where I where a skirt or dress."
Still, she can't stop the habit.
"When I pick it feels great getting rid of a scab," she said. "There is a little bit of pleasure from it."
Colleen has had a nervous tic, running her fingers through her hair, "like people cracking their knuckles" for her whole life.
But about a year ago it escalated. "If I felt a bump or an ingrown hair, I would pick it and then of course it would bleed and then scab over and I would pick it again and feel the scab and it became one of those things I realized I was doing."
Often it was in private, but Colleen realized that she was unconsciously picking her scalp in public, even at work as a public relations expert.
"One time a neighbor came over and I dropped something on the floor and bent over and she said, 'Oh my gosh, your head is bleeding.' I told her I bumped it on the counter -- no big deal," said Colleen. "Then, I started noticing that when I put my hands in my hair, people would say, 'Stop it,' and I did."
Women Are More Prone to Pathological Grooming
Even Colleen's hair stylist noticed the little scars and was afraid to put bleach on Colleen's scalp to highlight her hair. 'I could tell on her face, she was really concerned," she said.
Amy Morin, a licensed clinical social worker at the Health Access Network in Lincoln, Maine, provides outpatient therapy to adults and children.
Morin, who writes a marriage counseling blog, said treatment often involves the whole family.
"It's most often women with the problems, and husbands have difficulty understanding why they can't just stop," she said. "If we can get spouses involved in treatment we have a better success rate."
Pathological grooming issues are difficult to treat and require the patient to "be very motivated," she said.
"Treatment usually involves some motivational interviewing to help assess their motivation to stop," said Morin. "Then, it requires discovering what they get out of doing it."
Often patients pick, bite and scratch when they are in the comfort of home, watching TV, and may not even be aware of the habit. "Sitting on the couch may just trigger their muscle memory to begin skin picking in the evenings," she said.
Morin encourages them to be more conscious of their behavior.
"This may involve a paradoxical approach such as having them pick their skin in front of a mirror for 15 minutes every morning and evening," she said. "This teaches them to be more aware of what their hands are doing."
Knowing habits like hair pulling and scab picking are stress relievers, she teaches new relaxation techniques.
"Often, the shame and embarrassment that accompanies these habits lead people to feel very isolated, which perpetuates the cycle of hair pulling or skin picking," said Morin.
Such was the case with Colleen. "I am more frustrated with me than others trying to help," she said. "I never realize when I am doing it. And it's horrifying and embarrassing when they notice before I do."
Neurologist Shah reassures that every person who bites their nails or picks their scalp shouldn't think they have a serious disorder -- only if it interferes with their daily lives.
"Don't run to the doctor right away," he said. "If it causes concern, pay attention, but for the great majority of people it's not a problem and it's too easy to get swept up in the diagnosis. People have to decide for themselves if they need help or not."
In Nicole's case, she has other issues, including anxiety and some depression.
"A combination of cognitive behavior therapy and keeping my hands busy or being distracted helps," she said. "I look at my whole lifestyle -- my thought process and my sleep patterns and nutrition."
"I still have moments of anxiety that gets bad," she said. "Looking at colleges has been a stressful time. But the pulling isn't worse and I don't have any bald spots now."