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The TTM Index - From the TTM ReMailer
TTM: Trichotillomania Tele-Mailer Welcome to the Trichotillomania Tele-Mailer, an automatic mailing list for people involved with trichotillomania. Trichotillomania ("trich", "TTM") is an impulse control disorder of uncertain origin characterized by a recurrent urge to pull out one's own hair. PLEASE SAVE THIS FILE FOR FUTURE REFERENCE! It would be a courtesy to the many existing list members if you would take the time to read this message in its entirety. It has five sections: a) basic information, b) general ground rules, c) general procedures, d) acknowledge- ments, and e) a Frequently Asked Questions document ("FAQ"). A) BASIC INFORMATION This mailer will rebroadcast to all the list membership whatever you mail to: ttm@cs.columbia.edu For more information on how to use this list, send a message consisting of the words "help ttm" in the text of a message (do not use the subject field) to: majordomo@cs.columbia.edu To subscribe to this list so that you receive individual copies of messages, much like regular email, send a message consisting of "subscribe ttm" to: majordomo@cs.columbia.edu To subscribe to this list so that you receive batched messages, about 15-20 at a time, send a message consisting of "subscribe ttm-digest" to: majordomo@cs.columbia.edu To read the archives, consisting of all messages transmitted to and from the list each month since April 1995, send a message consisting of "get ttm archive.yymm", where yy is replaced with the last two digits of the year, and mm is replaced with the month (for example, "get ttm archive.9504" gets the messages from the first month of the list, April, 1995; "get ttm archive.9602" gets February 1996, etc.) to: majordomo@cs.columbia.edu If you would prefer to converse with a human being, send your email to: ttm-owner@cs.columbia.edu If you are interested in receiving a collection of documents concerning the control of TTM through nutritional and skin care methods, send an email to: ttm-owner@cs.columbia.edu Please give the FAQ a read, as it attempts to provide new list members with a running start on the discussions on the list. In general, the list membership is tolerant of "newbies" asking old questions, but will usually respond privately to such requests, reserving the public list for newer issues. B) GENERAL GROUND RULES Three design decisions in creating and maintaining this list may affect your comfort with it: 1) To ensure speed, this list is not moderated; your mailings are rebroadcast to the list membership within minutes. However, the list owner retains the ability to remove from the list anyone abusing it. 2) To provide some degree of discretion, only members of the list can see the mail addresses of other members, or retrieve old mailings from the archives (by using the "who" and "get" commands, explained in the help text you get from majordomo). However, anyone who has heard about the list can join it. 3) Again for speed, and, more importantly, to help develop a sense of community, the list does not provide for anonymous joining or anonymous mailing. Those members wishing to preserve their anonymity can do so by using a service provider that allows pseudonyms for logon IDs. C) GENERAL PROCEDURES Four items of procedure and policy that frequently come up are the following: 1) The amount of messages that you can expect to receive will vary widely. As of Fall 2000, there are from 450 to 500 people on the list. Some days there are no messages; on a few days there may be over 20; in general, there are about 10 per day. For reasons that are not understood, the postings seem to go through cycles of about four weeks long, first with little activity, then with a lot of activity. If you aren't getting any messages and you think the system is broken, send the list owner a private message. Or, just wait a few days. 2) Civil interactions are presumed. The list owner tends to be a bit lenient, and is reluctant to interfere with discussions, noting that the list very often will police itself. However, if in the opinion of the list owner, a member persists in doing more harm than good (as evidenced by people sending private mail stating such, or by a rash of unsubscriptions), uncivil posters will be unsubscribed--usually, but not necessarily, after a warning. In the five and one-half years of the list, four such people have been forcibly removed. 3) The posting or forwarding of chain letters, commercial advertisements, internet hoaxes, urban legends, etc., even if well-intentioned, is forbidden. Violators will be removed from the list immediately and without warning. Five such posters have been removed so far. If you have received an email that concerns you, check first privately with the list owner before you attempt to post it to the mailer. 4) This is a plain text mailer only! Please do not post using HTML or base64. Such messages will be returned, as will messages longer than 5000 characters. D) ACKNOWLEDGEMENTS This list is owned by John R. Kender, a professor of computer science at Columbia University in New York City, who became a hair puller at age 13, and who is currently enjoying a more than eight year remission which he attributes to nutritional control measures. This automatic list was inspired by the courage and good cheer of both Christina Pearson, the director of the Trichotillomania Learning Center, and Bill Sweeney, who bravely started it manually as a college freshman in 1994. E) GEOFF DEAN'S TRICH FAQ. (Version 4, Spring 2000.) by Geoff H. Dean <Geoff.Dean@tassie.net.au> [JRK: with some additional comments by JRK added, in square brackets like this] Please find enclosed the latest version of the FAQ. The main section is essentially the same, but the resources and links section has been extensively revised. Thanks to everyone who has contributed. Web sites please feel free to link to the FAQ online at http://www.irishlace.net/trichlibrary/. - - - - The following are the most Frequently Asked Questions by people new to the mailer. 1 - EXACTLY WHAT IS TRICHOTILLOMANIA? Trichotillomania is defined as recurrent pulling out of one's hair, resulting in noticeable hair loss, which is not due to another medical condition. There is an increasing sense of tension immediately before pulling out the hair, or when attempting to resist the behavior, and there is pleasure, gratification, or relief when pulling out the hair. 2 - HOW MANY PEOPLE ARE AFFECTED? The true prevalence of Trichotillomania is unknown, since people are often ashamed of their behavior and are consequently reluctant to discuss it, even with their doctor. So it is difficult to get reliable statistics. Historically it was thought to be rare, but the condition is now better understood and more people are seeking help. More recent estimates range from 0.5 to 3.5% of the population, depending on the definition used, and the nature of the study. 3 - WHERE DO PEOPLE PULL FROM, AND WHAT OTHER THINGS DO THEY DO? Sufferers as a group pull hair from a wide range of body sites including the scalp, eyebrows, eyelashes, beard, pubic areas; and, less commonly, underarms, chest, ears, nose and general body hair. The sites pulled by particular people vary widely, and may be restricted to one or two sites. Associated behaviors include searching for hairs that stand out in some way; repetitive drawing of hair through the fingers, or over the lips, before or after pulling; picking of associated skin; careful examination of the hair or roots; compulsively playing with, or splitting the hair; biting off the roots, or the hair itself into segments. The behaviors are also specific to the particular person; some just pull eyebrows with tweezers, for example, and others just pull from their scalp. Some pull intensively from particular sites; others try to manage their appearance by pulling less intensively, but from a wider range of sites. Some people eat the roots or the whole hair. Since hair is not digested, but remains in the stomach, this condition is potentially dangerous and medical examination should be sought. 4 - WHAT ARE THE CAUSES, AND WHEN DOES IT FIRST START? There is no known single or obvious cause, and there may be several contributing factors, such as genetic predisposition, diet and stress. It is now commonly regarded as a medical illness, and it may be caused by a disruption in the system for communication between cells in the brain. People frequently start compulsive pulling at 12 to 13 years of age, although commonly at a much younger or older age. The onset may be associated with hormonal changes at puberty, although many people recall a significantly stressful event associated with the onset. 5 - WHY DOES PULLING COMFORT ME? AM I GOING CRAZY? During hair pulling episodes, the sufferer frequently pulls from zones of heightened sensitivity. It is generally not painful to pull from these areas, or the pain is mild and the pulling causes great relief, or even comfort. The pulling can quickly become compulsive, causing relief and comfort on the one hand, but anxiety and distress at the increasing hair loss on the other. Sufferers can quickly become greatly distressed at an apparent inability to control their own behavior, and the continual increase in damage to both their hair and self-esteem. Is it any surprise if some sufferers feel they might be going crazy, even though they are not? 6 - ARE THERE ASSOCIATED ILLNESSES OR CONDITIONS? There are apparent similarities with the symptoms of Obsessive Compulsive Disorder (OCD), but only a low minority of Trichotillomania sufferers have OCD as well; 15% in one study. Depression has been reported to occur in a majority of people. However it is not known if this is due to a direct biological link between the two conditions, or whether the depression is a consequence of the severe loss of morale and self-esteem brought on by the hair pulling. Other behaviors believed to be common include nail biting and skin picking. Procrastination has been reported as a symptom. This behavior of putting off tasks is very frustrating to family and friends, and may be disruptive of personal relationships. 7 - WHAT TREATMENTS AND SUPPORTS ARE THERE, AND WHAT SUCCESS DO THEY HAVE? Medications are easy to use, but, used in isolation, are reported to have limited long term effectiveness for the treatment of Trichotillomania itself. They have been reported as a useful adjunct to other treatments, and are often used to reduce the symptoms of associated depression. Behavior Therapy attempts to stop or control specific undesirable behaviors, or to replace them with new ones. Cognitive Therapy usually involves identifying the thoughts that make pulling more likely, and working on replacing them with new thought patterns. These are often combined and / or used in conjunction with specific medications. The treatments might include Group Therapy; training in life skills such as Assertion, Anger and Stress Management, Goal Setting and Problem Solving; and Relaxation Training. Programs are usually tailored to the needs of the individual and, where practicable, involve the family and supporting persons. Psychotherapy and Hypnosis have also had some reported success. Diet control has been widely claimed to contribute to easing or eliminating pulling behavior. It is recommended that all sufferers carefully consider the impact of diet, since some people have reported benefits from even simple changes. Skin care has been shown to be important for control of the condition in some people. A variety of effective and readily available products has been identified to relieve intense itching or other associated problems which are present with some people. Religion may become a powerful motivating force for healing in some people, particularly as an adjunct to other treatments. It can contribute to a sense of community; improved self-esteem; a strong sense of purpose, and focus on goals; and an easing of depression. A sense of community is a powerful force for healing with many people - to know that you are not alone; to discover after years, or even decades, that your condition is known to medicine; to share your thoughts and feelings; to feel understood and accepted; to see people, who share the same affliction, caring for one another. There are reports from sufferers that aspects of hygiene may be important for some people. Specifically, those who pull from eyebrows or lashes may benefit from avoiding furry pets and frequent washing of the hands and eye area with soap and water. We should also consider what we regard as success, as so eloquently stated by a parent, "Improvement tends to be incremental rather than total or complete, and must be viewed in a broad perspective [rather] than simply the reduction or cessation of the hair pulling behavior itself. Rarely can a given course or therapy be viewed in such absolutes as success or failure, but rather as a process of continuous improvement in all aspects of the child's overall quality of life" M.J.Grant, TTM mailer, 5 Aug'99. 8 - HOW CAN I MEET OTHER SUFFERERS? There are two broad ways to interact with fellow sufferers: via support groups in your own locality, and via the various internet networks. There should be a Mental Health organization in your own area who can put you in contact with local support groups. In any case, the Trichotillomania Learning Center attempts to maintain a comprehensive listing of support groups. For those who have an internet connection, there are support groups using email which are knowledgeable, helpful and provide a safe environment for interaction and learning. Options for contacts include email networks (e.g. the TTM mailer); the Fairlite Bulletin board; online chat groups; private email with users met via these groups; and private web pages featuring contacts and links. Some groups organize, or facilitate activities, such as retreats, picnics, an International Day, and a bracelet symbolic of unity within the trich community. 9 - WHAT CAN I DO FOR SUFFERERS? The best way to help sufferers with Trichotillomania is to care about them, to try to understand them, and to help them to learn more about their condition, and how to manage it. Sufferers commonly express enormous relief to discover that they are not alone; to find that the condition has a name; and to be reassured that they are not weird or crazy. It can be a profound experience for a sufferer to describe their behavior and associated feelings to others people, and for this to be accepted. Parents of sufferers have often sought guidance about what is a helpful approach toward their children, and specific information and contacts are available for parents. 10 - WHERE CAN I FIND MORE INFORMATION? Please note that this is not intended to be a comprehensive list of information sources. Readers are referred to the pages below with the comment "resources and links". BOOKS Dan Stein, Gary Christenson, Eric Hollander, "Trichotillomania", 1999, American Psychiatric Press, 344 pages, ISBN: 0880487593, Price: US$45, Publisher phone in the US, (202) 682-6262. Also in online bookstores Jeffrey L. Anders, James W. Jefferson, "Trichotillomania - A Guide", 45 pages, by the Madison Institute of Medicine, 1989, ISBN: 189080214X Price: $4.95. Postal address: Information Centers, Madison Institute of Medicine, P O Box 628365, Middleton, WI 53562-8365; or by phone in the US, on (608) 827-2470. This is online at http://www.trichotillomania.ab.ca/rwpeta/Aguide.html. Cheryn Salazar, "You Are Not Alone: Compulsive Hair Pulling, the Enemy Within", 1995, Cheryn Intl., 262 pages, ISBN: 0965067009, Price: US$14.95, Web: http://www.cheryn.com/book.html. Also in online bookstores. Jack M. Gorman, M.D., "The Essential Guide to Psychiatric Drugs", Revised edition December 1998, paperback, US$6.99, St Martins Mass Market Paper, 416 pages. In online bookstores. [Comment: Expert but non-technical information on psychiatric drugs] WEB RESOURCES TLC (Trichotillomania learning Center) URL: http://www.trich.org/ Email: trichster@aol.com [Comment: Key site for resources and information; non-profit, subscription] TTM Mailer library web site http://www.irishlace.net/trichlibrary/ [Comment: Aims to make available select material from the mailer] Parent Group (email mailer + web) You can subscribe by sending a message to: parents_ttm-subscribe@egroups.com containing only the word subscribe. The group is also online at http://www.egroups.com/list/parents_ttm. This will require a free registration. [Comment: An forum to share ideas, hopes and concerns with other parents of pullers] [JRK: Teen Group (email mailer) You can subscribe by asking Trina: Send email to Trinski54@aol.com asking to be added and she will sign you up.] Online full text articles. http://mblcommunications.com/trichotillomania.html [Comment: Medical information about Trichotillomania - drug treatments; Behavior Therapy; Classification; Trichotillomania in Children and Adolescents; etc] JK Diet Pages http://jkdietpage.tripod.com http://soul4ce.home.texas.net [Comment: Information on dietary control of Trichotillomania] [JRK: not JRK's own pages, but one set up by Mari, who liked the diet] Amanda's Trich Web Guide http://www.jly2.com/ttm [Comment: Excellent private site, resources and links] Tina's Trichotillomania Site http://www.trichotillomania.AB.CA/rwpeta/ttm.html [Comment: Excellent private site, resources and links] Fairlite BB http://www.fairlite.com/trich/index.shtml http://chatinfo.trich.fairlite.com/ [Comment: Chat room, contact others, very popular] [JRK: Site discontinued in August 2000] Stephanie's FAQ http://www.geocities.com/~modularforms/trich/FAQ.html [Comment: Excellent and extensive FAQ] Open Directory Project http://search.dmoz.org/cgi-bin/search?search=trichotillomania [Comment: Useful links]
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