"I told my landlord that I had a really powerful calling to provide this service, but I had no money yet. He trusted me to rent the office space, which we still have today. Basically, we didn't pay rent for the first year and a half. We just kept track of what we owed, and I told him we would pay him back. We paid him back, and we are current every month," she recalled. Pearson also sold a portion of her voice mail company and lived off the proceeds, so she could start the Trichotillomania Learning Center (TLC). For the first three years of the organization's operation she drew no salary. In 1991, TLC was incorporated as a California nonprofit association. Its threefold mission is to raise public awareness, create and maintain a flexible support network, and raise funds for research. "With raised awareness and with a flexible support network, when answers come there is a way to get them to the individual who still suffers," Pearson said.
In the beginning, TLC policy was set by a small board of directors that came out of the first support group. Gradually, the board has evolved into a national board with representatives from across the country. All but one has trichotillomania.
Building a viable nonprofit group took immense dedication, and Pearson credits the Obsessive-Compulsive Foundation for providing much-needed help: "They were an absolute guiding light in giving us directions and information on how to go about providing national services; we didn't have any external funding. It was a marvelous alliance and still is to this day. The OCD Foundation continually refers clinicians and hair pullers to us. We serve as the information resource on trichotillomania."
In the spring of 1991, TLC launched a newsletter, In Touch, as a way to generate income, raise awareness and promote an interaction between health professionals and those who have trichotillomania. The first subscribers were mostly doctors and practitioners who were currently treating patients with OCD, but who wanted information on trichotillomania. In time, TLC established a membership program, and began to get national publicity. The group was featured on two segments of "The Dr. Dean Edell Show" and began to get inquiries from across the country. A letter on trichotillomania published in Ann Landers' syndicated column resulted in some 12,000 requests to TLC for information on the subject.
"So far, we have given assistance to about 20,000 hair pullers. Our membership is about 2,000," Pearson said. TLC sponsors three support groups in California and has been instrumental in the formation of some 30 others across the country. Its information line is manned by both volunteers and two part-time employees.
"We are averaging from 30 to 100 new contacts per week," Pearson said. "Each new contact can take an hour, because people are so desperate for connection. They need to hear someone say 'I know what that's like, I've been there'; 'I do that too and guess what, today I have hair'; or 'Today I feel good' or 'Today, I have a life.' As we all know, the hair comes and goes, but who we are and what we are doing, that's where the value is. Today, we don't base trichotillomania recovery on whether you have a full head of hair-we base it on whether your life is fulfilling, wholesome, healthy, and if you allow your potential to come forth.
"So many people with trichotillomania lead restricted lives. We see people who have pulled their hair for 50, 60 years, who never had children, never had a relationship, because they felt defective, they felt unacceptable, they felt deformed. We see people who won't leave their houses without spending hours trying to use makeup to disguise the hair loss on the eyebrows. It is thought that about one-third of people who acquire wigs in this country may suffer from trichotillomania. We see people who won't go swimming, won't go dancing, won't let somebody touch them. The sad thing is these are primarily high functioning, very intelligent human beings who are restricted from fulfilling their full capacity as members of society because of their fear of exposure. It's a terrible tragedy."