Feedback on the Atlanta Conference

25/4/98

The conference was sponsored by TLC. The morning was devoted to lectures by three doctors on TLC's Scientific Advisory Board:

Richard O'Sullivan, M.D., of Mass General Hospital and co-director of the MGH Trichotillomania Clinic, and Philip Ninan, M.D. and Barbara Rothbaum Ph.D. both of Emory University. Drs. O'Sullivan and Ninan are psychiatrists and Dr. Rothbaum is a psychologist. At the end of the morning, the 3 formed a panel and took questions for about half an hour.

In answer to Marge's question about if the docs were pushing meds, the answer is an emphatic NO. Drs. Ninan and Rothbaum collaborated on a study with some people taking meds and some doing cognitive behavior therapy. They had several Trichotillomania Scales to measure severity of trich and people were tested before and after. The results were that overall, people did substantially better on behavior therapy thanthey did on meds. I forget how people doing both did (I was in and out a lot.) Dr. Ninan has also completed a study on the effectiveness of Effexor in treating trichotillomania. In his study, only one person maintained remission for more than 6 months, and that person turned out to be on the placebo! So he is very realistic about the limitations of meds in treating trich. Dr. Ninan also mentioned some early-stage research indicating that the  measure of a certain component of serotonin in one's body, might be a predictor of how well a person would be helped by meds. 

In the afternoon we split up into separate workshops. First session there was a choice of: Medical Q&A with Dr. O'Sullivan; Hypnosis with a therapist who has successfully treated trich; a young people's esteem group with Christina Pearson; and a makeover session with makeup/lashes done by Cheryn Salazar.

Second session was choice of: Related Disorders discussion with Dr. O'Sullivan; Significant Others support group (facilitated by therapist); Support Group for Pullers led by Christina, and a session on hair pieces and wigs led by a woman named Melody Bowman from Ohio who custom-make hairpieces for women with hair loss and has several trich clients.

At the end of the day we got back together for a success panel. There were 4 of us. I was one. Amy F. who posts here and has been pull- free for almost 3 months was another. The other two women were pull-free also. We felt it was important not to send the message that "success" means no pulling. Of course that's the goal, but I talked about the success of losing the shame, of not letting the trich hold me back, etc. I mentioned this board and the concept of Persistently Pull Free (ppf) and how if I pull today I'm not back at Day 0. I think people liked the concept.

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The first two talks were rather dry, full of facts that a person who had done moderate research online and from TLC already knew. It   was rather theraputic to hear the word repeated so frequently with such casual respect by doctors who were knowledgeable about the subject. I felt as though we were a group of "normal" ill people- like diabetics or something. The stigma wore off a little throughout the morning. Everyone stayed quite serious, though... I was still nervous. We did laugh when the Dr. showed a slide of a parrot who pulled his feathers selectively and got better on Prozac. The third speaker gave an excellent description about Cognitive Behavioral Therapy that she has designed specifically for trich sufferers. I took notes and will post them eventually if anyone is interested.

some practical tips:

keep those little fingertip covers sold at office supply stores to  prevent papercuts while flipping pages EVERYWHERE :)

don't OD on Potassium, it could kill you

what works for one person might not work for another

GO TO A LOCAL SUPPORT GROUP. if you don't have one, START IT!

silly putty on the steering wheel, stress balls, koosh balls ,never touch your hair or face, don't look deeply into a mirror

get rid of the tweezers. for good.

document pulling activity very carefully, just writing it down  helps reduce pulling

baby steps "no pulling until lunch" "no pulling while i read"

reward yourself for doing well, don't punish yourself for slipping

The conference was entitled Trichotillomania: Transformation and Hope and that is what occurred. Xxxx already wrote about how it gave her family hope. And I KNOW many people were transformed. I wrote earlier that the first conference I went to changed my life, and it happened to people in Atlanta.  There was the woman who was late because as she told the group later, on the way here she kept pulling off the road to sob. When she took her seat in the ballroom she was still sobbing, and was comforted by the people sitting next to her, my beloved friends in the Atlanta support groups. By the end of the day she had just blossomed. She plans to get her whole family together this weekend and tell them what she has.

There was another local person who like the woman above, was almost too scared to enter the hotel. This happened to be a young man. During the Q&A session one of the doctors said it is clear that men who pull suffer just as much as women. I happened to be looking at him at the time and saw him nod his head vigorously. His friend who came with him told me "this was the best day of his life", that he had totally changed. I can totally relate because that's what happened to me at my first conference.

It really brought home to me how important it is to have these events in as many places as possible, because the people who most needed to be there were the ones who would not have been able to get themselves to a conference in another part of the country. It was all they could do to drive down the road to attend.

For those who have not experienced it, I cannot stress how powerful and healing it is to be in a room with 150 people, 125 of whom pull their hair. One attendee said, "For the first time in my life, I realized I am normal." Others mentioned the atmosphere of love and support.

I really urge people to meet others in your community (and attend events such as conferences and TLC's retreat.) TLC will help you find or start a group in your area. If you're not ready to start a group formally, you could be a contact person for your area, and TLC will put people who call them in contact with you.