Because trichotillomania is a fairly "new, out-of-the closet" disorder, Pearson said, it is still developing a voice of its own. "We are learning what procedures, formats and protocols work best for dealing with this particular kind of impulsivity. Sometimes, people liken it to addiction, but in my opinion, it is much more primal, coming from a preconscious, subconscious place. It is much more kinesthetic; not a lot of rationality is involved." Early on, TLC established an alliance with psychiatrists, psychologists and other helping professionals.
"In 1993, I called upon leaders I was familiar with in the medical community, clinicians and researchers, who were interested in the obsessive-compulsive spectrum disorders, primarily trichotrillomania: Gary Christenson, M.D., at the University of Minnesota; Richard O'Sullivan, M.D., at Harvard Medical School; Carol Novak, M.D., at Pioneer Clinic in St. Paul, Minn.; Charles Mansueto, Ph.D., of the Behavior Therapy Associates in Silver Spring, Md.; and many others.
"I asked them if they would be willing to participate as an advisory consultant board on behalf of this new, fledgling organization, and they were wonderful and have been wonderful to this day," she said. "We received funding from Solvay Pharmaceuticals to facilitate bringing these people together, which had and has had a profound effect on the treatment of trichotillomania."
The collaboration of the researchers and clinicians has resulted in a soon-to-be published textbook on trichotillomania being published by American Psychiatric Press, edited by Daniel Stein, M.D., a member of TLC's advisory board, and Eric Hollander, M.D., from Mt. Sinai Medical Center. The information interchange has also resulted in the development of new diagnostic rating scales and the changing of some of the wording about trichotillomania in the revision of the DSM-IV.
Currently, the Scientific Advisory Board is working on developing treatment protocols and establishing a program similar to that of the Obsessive-Compulsive Foundation, which has instituted a Behavior Therapy Institute that trains clinicians. The first TLC-sponsored medical conference on trichotillomania was conducted earlier this month in Philadelphia. "Phillip Ninan, M.D., from Emory University School of Medicine in Atlanta, is asking physicians across the country who are treating their patients pharmacologically to follow certain protocols, so that even without the funding for a multicenter study in a year or two, we can have some valuable information from which to create treatment algorithms," Pearson said. "These are professionals who receive not a penny for this work. They are working to help us, because they see the impact of trichotillomania on their clients' lives." When TLC sponsored its first retreat in 1992 (PT October 1992), three members of the Scientific Advisory Committee attended: O'Sullivan, Novak and Mansueto.
"The doctors came and sat around the bonfire and ate lunch in the dining hall with everyone. It was a transforming experience for them and for others. Our sixth annual retreat was held in August with 150 people coming from 33 states and Canada," Pearson said. "The impact of the retreat is that it provides people who have suffered from an isolating disease the opportunity to step outside the need to hide, and the opportunity to be among people who were knowledgeable about trichotillomania."
Finding funding for TLC has not been an easy task, according to Pearson. She said TLC has approached about 50 foundations, but has received little external funding.
She believes that is due, in part, to a lack of knowledge about trichotillomania's impact on a person's life.