Harry Benjamin Syndrome  (HBS)

          Harry Benjamin Syndrome (HBS) is an intersex condition, which develops in the early stages of pregnancy and affects the process of sexual differentiation. What occurs is that the brain develops as one sex, but the body takes on the appearance and characteristics of the other sex. The difference between HBS and other intersex conditions is that currently there is no evidence of the syndrome until after the baby is born - sometimes even as late as adolescence.

In the past, HBS was known by various names with transsexualism being the most commonly used. HBS has even been assumed to fall under the “transgender umbrella”. Although still erroneously classified as Transsexualism by the ICD-10, and as Gender Identity Disorder by the DSM-IV-TR, many in the medical and psychiatric communities are beginning to recognize HBS as a separate entity.

Also provided for examination is the BSTc research done by the Dutch on the hypothalamus of the brain that gives indicative support to the finding of difference in the brain of the transsexual while at the same time excluding the brains of others who might be homosexual or transgender and even ‘normal’.

We list for further information studies done by the Swedish for your review as well as one of the many letters we have received from interested professionals who agree and support the contention that HBS is an inborn biological anomaly as did Dr. Harry Benjamin himself as well as many others. Transsexuals do not change their gender, which is brain. They trans or correct genitals, which is sex. If one does one then let them be clearly distinctive about just that without confusing the matter for others.

Dr. Gooren presented to the Australian Courts a case involving a FtM HBS and his presentation of facts was the main component for the success of the case that was convincing because of his genetic coverage of fact.

                                        What is Harry Benjamin Syndrome?
 

          Harry Benjamin Syndrome (HBS) is a congenital intersex condition that develops before birth, involving the differentiation between male and female. It is believed that fewer than 1 out of 2500 children are born with this condition. Although its etiology is still unknown, there may be genetic and/or hormonal factors involved. What occurs is that the physical appearance of the body is not in accord with the physical structure of the brain. For example: a masculine-appearing child with HBS would have a female brain structure and identification, but her genitals would appear male (the opposite would hold true for those with female genitalia and male brain structure). Currently, it is impossible to diagnose this condition before or at birth, causing such children to be raised as the wrong gender.

          We now understand that the brain defines one’s appropriate sex; therefore one's true sex is determined by the structure of the brain - not the genitalia. Gender identity is hard-wired in the deeper CNS structures of the brain. The main difference between HBS and other intersex conditions is that there is no apparent science or evidence at the moment of birth making it possible for doctors to diagnose it.  Further confusion happens when transsexualism is treated as a sub-set of transgenderism – as it often is – despite these being completely separate and unrelated conditions.

          Perhaps the reader might glean some degree of understanding from the
Article published by Prof. Milton Diamond.

          In comparison to other intersex conditions, HBS is twice as common as Klinefelter Syndrome, and five times as common as Turner Syndrome. It is estimated to be 25 times more frequent than Androgen Insensitivity Syndrome (AIS).

          Although most people with HBS have been diagnosed after childhood, this hasn’t stopped them from having genital reassignment at a later date and living a normal life afterwards. On the other hand, due to life threatening health concerns some have been forced to live without surgery. fortunately, however, this is relatively rare in today’s age of medicine. Some affected individuals use elaborate rationalizations to disguise the fact that they have HBS, but no desire for corrective surgery. For a true HBS corrective surgery is desired as soon as feasible as a need and choice is rarely a selected option. 

          The level of distress experienced by people with HBS varies from person to person. Although society's sex-related expectations are far from perfectly suited for all individuals, not everyone would find being treated as the opposite sex to be that terrible. An individual’s degree of concern for their own appearance and anatomy is also very personal: some people have little discomfort with their physiological sex, or couldn’t care less how others perceive their gender. These people could and should simply be classed as transgender.

          It is perfectly normal and extremely common for people to place a great deal of importance on both their own and other people's physical sex and upon social gender expectations and roles. It is rarely reflected upon and often taken for granted. But for a person with HBS the internal dissonance is deeply rooted. People with HBS almost always experience growing dissatisfaction and unhappiness with both their bodies and their social gender role often going so far as to consider suicide if they feel there is no remedy for their condition.  This dysphoria continues until the physical sex can be surgically brought into accord with the brain

          The pain of HBS is exacerbated by uniformed and intolerant attitudes. Employers, friends and even family are often disbelieving and hostile towards those who are revealed to have HBS. Also, our society in general does not treat people at all well when presented with a sexually ambiguous appearance and often confuse those with an exhibitionist or fetish attitude with those born with HBS. HBS individuals have become targets for discrimination and verbal abuse - sometimes escalating into violence. In addition to such situations, individuals with HBS often have to deal with the loss of friends and family support, as well as loss of employment.

          Though the definitive cause of HBS is uncertain, and indeed there may be more than one cause, the most indicative explanation is a hormonal irregularity during pregnancy. Regardless of the cause of HBS, it can be a genuinely traumatic condition that deserves understanding, compassion, and further research.

          Harry Benjamin's Syndrome (HBS) is a congenital intersex condition that develops before birth, involving the differentiation between male and female. Therefore a girl with Harry Benjamin's Syndrome would have a brain that is sexually differentiated as female but her genitals would appear male. 
          Boys born with HBS have female genitalia even though their brains are male. As it is impossible to diagnose HBS at the moment of birth, HBS babies are raised in the social role reflected by their physical sexual characteristics (genitals) rather than their true brain gender. Societal expectations can cause a child to mask his or her true brain gender contributing to the difficulty of addressing the condition in the developmental years. This, in turn, often adds to increased stress and psychological problems may result. These problems usually abate   and often even disappear after surgical affirmation, when physical sex is finally aligned with brain gender. 

          Let us not confuse HBS with Gender Identity Disorder (GID). GID might well be classified as psychologically defined variant behaviors, whereas HBS is “hardwired” due to the structure of the brain. HBS, therefore, should be treated primarily as a biological/medical condition.  Although statistics vary according to source, estimates of the occurrence of GID range from 1 in 100 to 1 in 500. Surely these numbers reflect behaviors that would have to include every man who has ever put on women’s clothing (fetishism, transvestism, and/or transgender behaviors). They do not reflect the incidence of HBS -- a much rarer condition, occurring as infrequently as once in 2,500 births, and possibly even less.

          There are many different theories concerning the development and the expression of GID behaviors, which should make clear the need to differentiate them from the medical anomaly of HBS. The conditions should not be lumped together as if the same entity, and the distinctions must be clearly elucidated by professional medical evaluators since treatment protocols differ.

                                       How is HBS medically treated?

          Early treatment of HBS can virtually eliminate all symptoms associated with the condition. Treatments to assign the person’s body to its proper sex the will include: Hormone Replacement Therapy (HRT), and Sex Affirmation Surgery SAS (also known as Genital Reassignment Surgery (GRS) and/or Sex Reassignment Surgery (SRS) or as we prefer Sexual Affirmation Surgery (SAS). Other optional surgeries may be recommended.

          To this day, HBS is mostly seen as synonymous with transsexuality, and this creates a problem in the proper diagnosis and treatment for people living with HBS. The word transsexualism is usually linked to men wanting to surgically become women (or vice-versa) and commonly viewed as a mental disorder. We still find doctors who erroneously refer to HBS as Transsexualism. It sometimes seems as if many in the medical community are too busy to keep up with the most recent research about the brain and its relationship to gender. This lack of currency may be the cause for the continued use of words like transsexualism and others in some practices.

          Today’s medical community is perfectly prepared to successfully treat HBS, but is still lacking quality diagnostic criteria. The resultant lack of research and information about this condition leaves doctors few other options than to diagnose, code for and treat this physiological condition as if it were a mental disorder. The medical community and insurers are also inundated with claimants who self-diagnose with HBS and self-label as transsexual, but whom in reality are simply attempting to enfranchise behaviors under the socially constructed “transgender umbrella” that bears no association to HBS. Perhaps taking a look at who added that confusing ‘Trans’ in gender might be of some value.
Should the reader wish to read further please do not be surprised by the bluntness of the author Karen Gurney who is an intelligent and very informed person who also happens to be an HBS who not only was a contributor in the battles for legal recognition in Australia but still one of our strongest advocates.