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Home / Features / BIID / 2003 Meeting

2003 Meeting

Written by Sean on Wednesday, April 26, 2006

Announcing the Third Annual International BIID Meeting
�??STEPPING INTO THE FUTURE�?�
FRIDAY, JUNE 6, 2003, 9AM–5PM
COLUMBIA UNIVERSITY, NEW YORK CITY

Welcome and introduction of speakers, participants and guests by Michael First, MD

Speaker Dr. Michael First �??Desire for Amputation of a Limb:  Paraphilia, Psychosis or a New Type of Identity Disorder�?�

Dr. First summarized the results of a structured telephone interview study involving 52 subjects who self-identified as having had a desire to have an amputation.  The results indicated the existence of a distinct clinical condition, characterized by a �??lifelong�?� desire for an amputation, typically, of one or more �??major limb(s)�?� (e.g. a[n] arm[s] or leg[s]).

This condition was found to correlate with serious negative consequences, i.e. amputation attempts marked impairment and distress.

Similarities between this condition and Gender Identity Disorder were explored.

Dr. First suggested that this condition be conceptualized as an unusual dysfunction in the development of one�??s fundamental sense of who one physically is, and called �??Body Integrity Identity Disorder.�?�

Dr. First noted that a paper based on this study was recently submitted to the American Journal of Psychiatry and that it will probably take months before it is known whether it will be accepted for publication.

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Speaker Dr. Robert Smith: Amputee Identity Disorder: Is Surgery Appropriate?  (co authored by Dr. Keren Fisher, Dr. Russell Reid and Dr. Richard Fox)

Dr. Smith first defined Amputee Identity Disorder (AID/BIID), identified many reasons why people self-injure and compared and contrasted AID/BIID with various conditions– including paraphilias, Munchausen�??s Syndrome and Body Dysmorphic Disorder. Etiology and symptoms of the disorder were discussed.

The second portion of the talk moved into a discussion of the case presentations.  8 patients initially presented to the team for initial evaluation and screening to be considered for amputation and only 3 made it to consultation with the surgeon. Standard assessments and evaluation criteria were discussed.

Outcomes for all the patients who received surgery were discussed. All patients who underwent the procedure reported marked positive changes in their lives and improvement of function.

Dr. Smith discussed the reasons why elective amputations can no longer be done in Falkirk, Scotland. 

Dr. Smith discussed recommendations and observations made as a result of his experience performing elective amputations (particularly the importance of patient selection).

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Speaker was Ray Blanchard, PhD: �??Theoretical and Clinical Parallels Between BIID and GID�?�

Dr. Blanchard discussed the parallels between BIID and GID, the history of social acceptance of Sexual Reassignment Surgery (SRS) and assessing the therapeutic impact of sex reassignment surgery and elective amputation.

Dr. Blanchard asked the question: Which aspects of GID phenomena are relevant to BIID?. He also discussed the taxonomy of male-to-female transsexualism.

Dr. Blanchard covered the aspects of social acceptance of SRS, including positive clinical evidence, backing of prestigious institutes and experts, favorable social climate, sympathetic media and high-profile attractive pioneers.

Dr. Blanchard discussed his belief that outcome studies on the therapeutic impact of SRS would never have been sufficient to bring about social acceptance of surgical intervention, but they were certainly necessary.  His hypothesis was that the same fact may hold true for the surgical treatment of BIID.

Lunch followed Dr. Blanchard�??s talk

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Speaker was Anne Lawrence, MD, PhD: �??BIID and GID: Paraphilia, Identity, and Access to Care�?�

Dr. Lawrence defined the term �??paraphilia�?� using the DSM-IV criteria, and discussed the interaction of paraphilia and identity in Gender Identity Disorder. Dr. Lawrence posed the question �??Is the desire for amputation a paraphilia?�?� She also covered objections to the idea that the paraphilia model applies to BIID.

Dr. Lawrence discussed a paradigm referred to as the �??Erotic Target Location Error�?� model (developed by Drs. Freund and Blanchard).

The final portion of Dr. Lawrence�??s talk focused on the public health model of �??Harm Reduction�?� as it could apply to BIID �?? both in the areas of motivating surgical professionals to be of assistance to this population, and helping members of the community who attempt self-amputation to take steps to preserve life and minimize damage.  Legal concerns were also discussed in this portion of the talk.

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Movie Trailer Presentation: Jeremy Wang-Iverson of Vesto Productions

Pretender�??s Dance– 3 minute movie (fiction) trailer about a dancer who discovers that her boyfriend has BIID and pretends and uses that to inspire her dancing. The trailer has been developed for this 20-minute short film, and a feature may be developed at a later time. Discussion followed about the ability of the public to comprehend the subject matter based on the trailer.

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Group Discussion re: Future Plans

Goals of Pilot Program

• Develop screening criteria to rule in those most likely to benefit from surgery
• Develop instruments to measure intensity of BIID in order to evaluate clinical change post-surgery
• Collect pre-op and post-op data and at certain follow-up points in order to document whether improvement, if any, is sustained
• Determine that condition fits basic criteria for BIID:
  • Age at onset in childhood or adolescence
  • Reason for amputation is to restore true identity
  • Absence of other psychiatric conditions that could explain desire for amputation, especially psychosis
  • Require that reversible measures be tried first: e.g.-high dose sustained trial of SSRI (e.g. Prozac, Zoloft, etc.), and psychotherapy
  • Insure that some sort of assistance is available to the full-spectrum of people with BIID, including those not seeking surgery at this time
  • Possible inclusion of a �??real life test,�?� possibly including use of applicable adaptive equipment for an extended period of time

Issues to be Considered

Are there any absolute exclusionary criteria for surgical consideration?

What are the legal issues involved in setting up a pilot program?

How do we identify and train therapists who are interested in working with clients with BIID, and what will be the protocol they follow?

How do we deal with the desire/need for multiple �??major limb�?� amputations?

What are the socio-economic issues involved in elective amputations?

How can information about BIID be most effectively disseminated to the international medical community (particularly the surgical and psychiatric communities)?

Can future meetings be held abroad to increase access to those from other countries? Would an institution similar to Columbia Medical Center be available to host such a meeting?

What will be the procedure for long-term follow-up of participants in the BIID program? (Follow-up with people who have already achieved major-limb amputation(s) at the desired site(s) to determine surgical efficacy may be a related goal.)

How can the website be changed and/or improved to assist people in accessing information, and increase access to studies, therapist training, etc.

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