What is Harry Benjamin's Syndrome?
Harry Benjamin's Syndrome (HBS) is a congenital intersex condition that develops before birth, involving the differentiation between male and female. It is believed that every 1/30,000 is born with this condition. Therefore a girl with Harry Benjamin's Syndrome would have a females brain sex but her genitals would appear male. The boys born under this condition have female genitalia even though their brains are male. So far it’s impossible to diagnose this condition at the moment of birth causing the babies to be raised in the wrong gender role. There are figures that confuse the rarity of HBS by including in the numbers those under the transgender umbrella who are not HBS or even true transsexuals but are better aligned with fetishists who 'went all the way' such as the autogynephilic thereby making it seem that the number of 1/2500 might be better applied.
We now know that the brain is the primary part of the body that can define one's sex, therefore one's true sex is determined by the structure of the brain, and not simply by the genitalia. Gender identity is hard-wired in the brain and in deeper CNS structures. The main difference between Harry Benjamin's Syndrome and most other intersex conditions is that there is no apparent evidence at the moment of birth making it impossible for doctors to diagnose it.
In comparison with other intersex conditions Harry Benjamin's Syndrome is twice more frequent than Klinefelter Syndrome and five times more frequent than Turner's Syndrome. It is also known to be 25 times more frequent than Androgen Insensitivity Syndrome. Never-the-less it too is a very rare condition if not confused with those who identify with the gender variant transgender.
Most people with Harry Benjamin's Syndrome have been diagnosed around 20 to 45 years of age with many others being observed in their teens and even as young as 4 and 5. This hasn’t stopped people from having their genitalia reassigned and living a normal life afterward. There are many who might make claim to have Harry Benjamin Syndrome and often they have been previously referred to as pseudo transsexuals. That determination of course is for a therapist competent in the HBS field of medicine to determine.
The level of distress experienced by people with Harry Benjamin's Syndrome does vary from person to person. Society's gender-related expectations are far from perfectly suited to all individuals, and not everyone would find being treated as the opposite gender to be all that terrible. A persons degree of concern for their own appearance and anatomy is also very variable -some couldn't care less what they had between their legs or how others perceived their gender. But it is perfectly normal, and probably much more common, for people to place a great deal of importance in both their own and other people's physical and social gender. It may be something they take for granted and hardly think about, but that is only an indication of how deeply rooted it is. People with Harry Benjamin's Syndrome almost always experience growing dissatisfaction and unhappiness with both their bodies and their social gender role until they can bring them into conformity, - some even to the point of suicide if they feel they have no other solution to their problem. For someone to claim to be HBS born and not express a very strong need for corrective surgery should be the first clue that this person might be suffering from a gender identity disorder and is using HBS simply as a cloaking mechanism so as to hide a behavioral condition usually linked to one of the many elements under the transgender social construct. Many often use the term non-op transsexual (an oxymoron to be sure) to define themselves and sometimes even HBS but in fact might best simply be classed under one of the transgender elements that truly reflects their gender identity and/or confusion.
The pain of Harry Benjamin's Syndrome is exacerbated by society's attitude toward it. Employers, friends and especially family are often disbelieving and hostile toward people who reveal they were born with Harry Benjamin Syndrome. Also, society in general does not treat people whose appearance is gender ambiguous at all well; targeting them for verbal abuse, discrimination, and sometimes violence. This is hard enough to deal with without also enduring the loss of family support and possibly employment that often accompanies it. Though the cause of Harry Benjamin's Syndrome is uncertain, and indeed there may be more than one cause, the most likely explanation is a hormonal irregularity during pregnancy. But whatever the cause, it is a genuine, traumatic condition that deserves understanding and compassion.
How is Harry Benjamin Syndrome medically treated?
The early treatment of Harry Benjamin Syndrome can eliminate virtually all of the symptoms of the condition.
In order to properly correct the person’s body to its proper sex the treatment will include Hormone Replacement Therapy (HRT) and Sex Reassignment Surgery (SRS) or as we would prefer it to be addressed: Sex Affirmation Surgery (SAS). Many refer to it as Genital Reassignment Surgery (GRS) but to often GRS is confused with Gender Reassignment Surgery which we find too easily linked to transgenderism; gender is brain and not subject to surgical treatment.
In addition many doctors and therapists will follow the guidelines of the Harry Benjamin Standards of Care that would require a surgical applicant to live in the actual role of the intended physical sex.
To this day this Syndrome is mostly known as transsexualism and wrongly considered as a sub-class of transgenderism which is definitely a gender variant condition often linked to elements of a sexual or fetish nature. This creates a problem in properly diagnosing and treating people living with HBS.
The word transsexualism is usually linked to men wanting to be women or vice versa and seen as a mental disorder. It is not a mental disorder but an intersexed condition as a result of a fetal anomaly. We still can find doctors referring to this Syndrome as Transsexualism. It may seem like the medical community is ignoring the most recent research about the brain and its relationship with gender. This has caused confusion and the still-remaining use of words like transsexualism and 'trans' whatever to wrongly be linked with HBS. Please refer to our links section for more details and research information.
The medical community of today is perfectly prepared, if given the proper information, to successfully treat Harry Benjamin Syndrome. But is still lacking quality diagnosis caused by the lack of information updates about this condition leaving doctors confused by the myths of the past.
A personal suggestion concerning doctors is that you should not take everything they say as fact because they may not have up-to-date information. We recommend listening to the doctors, (since they know how the human body works) but don’t assume they can’t make mistakes; after all they are only human
It is advisable to visit an endocrinologist and give him or her up to date information about Harry Benjamin Syndrome, this way you will be opening the door to receive more objective treatment.
A psychological follow up is very useful and recommended for a proper diagnosis of this condition and its physical treatment afterward can correct it completely.
In most cases, it’s impossible to give a diagnosis before late infancy or pre-adolescence, although countries like the Netherlands are very advanced in diagnosing and treating this syndrome. Thanks to the hard work of Cohen-Kettenis, people living in the Netherlands are able to start the treatment before puberty.
It’s important to remind the public that Harry Benjamin's Syndrome is a physiological condition and not psychiatric, even though the help of a psychologist can be very useful to the patient, especially for the young ones. The treatment of this condition includes HRT and SAS. You should always start by visiting an endocrinologist and a surgeon first. |