Only eight weeks after beginning treatment for trichotillomania (hair pulling) at Stanford University Medical Center, Christina Pearson found herself being invited to appear on a local television show in Seattle to discuss the disorder.
"I run a voice mail company, so I took a hotline number with me which I gave out on the show. By the time I got home that evening, I had hundreds of calls...and about 600 by the end of one week. I was stunned," she said. "People were desperate for help. They talked about going to doctors and hospitals and of having been basically rebuffed, not negatively, but because the clinicians didn't know what to do with them. There was no treatment modality, and there were no treatment providers either. Trichotillomania then was considered a rare condition. It became evident that there was a terrible, terrible need for some type of resource to begin the process of raising public awareness, creating treatment options and providing valuable referral sources."
From her own pain, Pearson felt a strong commitment to do something.
"The absolute suffering and the desire to die rather than expose myself is what drove me to try to make a difference. It was the absolute agony that I experienced as a teenager and through my entire 20s. I was tying my hands together, taping my mouth shut, wearing ski masks to bed-terrified that someone would discover I was defective. I was pulling my hair out, eating it, and not understanding that if I was so smart, why couldn't I stop. I lost all of my higher education to trichotillomania. I dropped out of eighth grade. I closed the door to intimate relationships. I was spending six to eight hours per day pulling my hair and trying to run a small business."
It was an article by Susan Swedo, M.D., and others from the child psychiatry branch at the National Institute of Mental Health (NIMH), that helped Pearson first identify her illness.
"I found out that there was a name for compulsive hair pulling due to an article on the double-blind comparison of clomipramine [Anafranil] and desipramine [Norpramin] in the treatment of trichotillomania published in the New England Journal of Medicine [1989:321(8):497-501]. I then went from there to look for resources that would work." According to Pearson, Judith Rapoport, M.D., Swedo and others at NIMH had started studying obsessive-compulsive disorder (OCD) primarily in children, and when they issued calls for people to participate in studies, they got responses from many hair pullers asking for help.
"They became aware that there must be a higher number of hair pullers than had been previously thought, and that was when it began to get attention," Pearson said, adding that 6 million to 9 million people in the United States are said to have trichotillomania.
In the spring of 1990, Pearson and others started a support group for hair pullers in Santa Cruz, Calif., which still operates today. By the fall, Pearson persuaded her landlord to let the group rent an office to serve as an information center for hair pullers.