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What is Harry Benjamin's Syndrome?
Harry Benjamin's Syndrome (HBS) is a congenital intersexual condition that has a pre-natal developmental origin, and it involves the differentiation of the male and female gender identities in the brain. The estimated incidence of HBS is 1 in 100.000 live births.
To put it simply, a girl with HBS would have a female neurological gender identity, whilst the genitalia would be male. Conversely, boys with this condition have female genitalia coupled with a male neurological gender identity.
At present, it is not possible to diagnose this condition at the time of birth. Therefore, the children are raised in the gender role opposite to that of the neurological gender identity. This often leads
to psychological problems unrelated with the HBS itself.
Gender identity is a purely neurological function, with no psychological factors appended.
Therefore, neurological factors determine gender identity, not the anatomical structures of the genitalia. The physical structure of the brain, such as the CNS, fix gender identity. Since there is no apparent evidence at the time of birth, it is difficult for doctors to diagnose the condition, quite unlike
other intersexual conditions.
Harry Benjamin’s Syndrome is not an illness or a disorder, and we
should not consider it such, but rather as a physiological variation of human sexual formation, as in the case of other Intersex
Syndromes. When, on this page, we speak about "suffering" HBS, we refer to the suffering caused by the physical incongruence
that people born with this condition experience, and not to a pathological explanation for HBS. Read more about the convenience of the term "Syndrome" applied to this condition in the page Retrospective
of this site.
If we compare HBS with other congenital intersexual variations, Klinefelter’s Syndrome it occurs a
hundred times per each HBS live birth, and Turner’s Syndrome occurs fifty times per each HBS live birth. Research shows
the incidence of HBS to be 10 times less common than AIS (Androgen Insensitivity Syndrome).
Most diagnoses of HBS occur when the individual is between 20 to 45 years of age, but many are diagnosed in their teens, and some cases are detected
in early childhood (four to five-years old). No matter at what the age the diagnostic decision is given, the affected individuals
go on to HRT and SAS, and live a perfectly normal life afterwards. Nevertheless, the earlier that one undertakes corrective HRT and SAS, the better it is for the person
involved.
On the other hand, some have only had HRT, and not SAS, and that appears to be sufficient in these cases.
(Are these true instances of HBS, or transsexuality? Research has not answered this question, yet.)
The level of stress induced by societal pressures concerning gender norms and behaviour differs widely from
one individual to another. The expectations of most societies regarding gender-specific actions do not suit all individuals,
and many find some sort of cross-gender identification not displeasing (this is probably a sign that the person involved does
not have HBS).
The degree of anxiety concerning appearance and anatomy also varies widely from one person to another. Some
do not care much about their genitalia, or about how others perceive the gender of their public persona.
However, the overwhelming majority of people place much importance in the expression and congruency of theirs
and others’ social and physical gender. Most take their gender for granted, and it is so deeply rooted in our instinctual
behaviour and expectations that we do not think of it consciously.
Conversely, those who have HBS experience a steadily growing dissatisfaction and unhappiness with the discontinuity
between their neurological gender and their genital anatomy. The dissonance that exists between a person’s neurological
gender and the expected gender-appropriate behaviour of society can be devastating.
There are only two alternatives. One can seek medical help, and obtain HRT and SAS to correct the anatomical
incongruency and thereby eliminate the gender discontinuity. By adjusting physical anatomy to reflect neurological gender, the person involved receives release from the tension of HBS.
Alternatively, the pressures of the anomalous gender/anatomy signals can drive a person to suicide if they
do not seek a medical correction of the condition. When one finds that one’s personal gender incongruency combines with
an unrelenting societal insistence upon a properly gendered expression of behaviour, the enharmonics of the situation lead
many to take their own lives.
The hostile attitude of many in society often exacerbates the pain and suffering of those with HBS. There is often disbelief and hostility directed towards those who reveal their HBS, and there are those who believe that any medical correction of anatomy is contrary to all reason and good-sense.
In addition, many elements in society treat anyone with a gender-ambiguous appearance badly. They target
the gender-incongruous and subject them to verbal threats and harassment, physical intimidation and violence, and use discrimination and ostracism to isolate such individuals socially.
This situation is harsh enough to deal with, but a loss of support from family networks and friends often
compound it. What finally brings many to the brink of despair is the loss of employment that often accompanies societal rejection
of the individual. This is why untreated HBS causes suicide. It is not the HBS, but the pressures surrounding it that can
drive people over the edge.
At present, the exact physiological cause of HBS is unknown, and it may be that there is more than one discrete antecedent for the condition. If one were to ask reputable researchers today, the probable answer would be that pre-natal events in
foetal development would tell us the story.
No matter what is the ultimate causal factor, HBS is a physiological condition that has the potential to create a traumatic situation in an individual’s life. If one does not treat it with the appropriate
medical regimen, it can lead to the death of the person involved. That is why society must learn to treat those with HBS with
compassion and understanding.
HBS is simply a medical condition; it is not mental or psychological derangement.
In Doctor Meltzer's own words:
" (...) Meltzer debunked several myths about suffering HBS. He stressed that
'trans' people are proven to be biologically different than others of their assigned gender, and that upbringing does not
create their feelings of gender dysphoria. He also said that to be a person born with Transsexualism has
nothing to do with having the ability to have intercourse and that 'trans' people simply want their appearance to coincide
with their gender identity."
Basic Terminological
Differences
How is Harry Benjamin's Syndrome
medically treated?
Note: This site only contains a brief description of the different
treatments available for those who must deal with Harry Benjamin's Syndrome (HBS). If you would wish to learn more in detail
about the various medical therapies available, the following link is a good place to begin. How is MtF transsexualism medically treated?
Early detection and treatment of HBS can eliminate virtually all symptomatic signs of the condition.
The prescribed and normative treatment regimen for re-assigning the person's body to the proper physical
structure congruent with neurological gender identity consists of two stages.
The first stage is Hormone Replacement Therapy (HRT), where the administration of appropriate hormones results in the start of the desired somatic changes. This phase
of treatment usually affects secondary sexual characteristics only.
The treatment culminates with Sex Affirmation Surgery (SAS), where the surgeon modifies the anatomical structures of the genitalia to be in congruence with the neurological
gender. This is NOT "sex-change" surgery, as the gender of the affected individual never changes.
Unfortunately, many still consider HBS as being identical to transsexualism, and this creates difficulties
in the proper diagnosis and treatment of the condition. Too many people link the word transsexualism to psychopathology and
mental illness. They see it as a case of "men wishing to be women".
Some MDs still describe this condition as transsexuality. At times, it appears as though doctors are ignoring
the latest research on neurological gender identity. This ignorance leads to physicians retaining the use of such outmoded
terms as transsexuality.
The current medical system can treat HBS very well, but the ignorance of individual practitioners leads to inaccurate diagnoses and treatment. The lack of information concerning
the latest neurological research leaves many general practitioners struggling with past myths and misconceptions.
Please be careful when you consult with a doctor concerning HBS. They may not have access to the latest medical
research regarding the condition. One should listen attentively to a physician, for they have a great deal of knowledge about
the human body and its’ processes. Nevertheless, as they are also human, they can be as prone to mistakes and wrong
assumptions as are the rest of us.
It is advisable to seek the advice of an endocrinologist who is experienced in treating patients with HBS.
In this manner, you shall receive objective treatment from the doctor and staff, and the chance of the MD having had access
to recent information is more probable.
Psychological therapy is useful for the diagnosis of the condition, but only a treatment regimen of HRT and SAS
can correct the physical anomaly.
In most cases, it is not possible to give a diagnosis before late childhood or early adolescence, although there are places such as the Netherlands that are very advanced in diagnosing and treating HBS early in life. In
that country, those diagnosed with HBS can receive HRT before the onset of puberty, thanks to the work of those such as Cohen-Kettenis.
It is important to keep in mind that HBS is a physiological, not a psychological, condition. Psychological
intervention is useful for a limited number of patients, especially younger ones. The most important members of the treatment
team are the endocrinologist and the surgeon. The psychologist plays an ancillary role only.
As stated above, the only recognised medical treatment for HBS is HRT followed by SAS.
Reading more...
SOC-HBS
HBS is an Intersexual Condition
"For
us in Australia, acceptance by both state and federal courts that transsexualism is a medical condition with a biological
basis has given us a range of common law rights that our brothers and sisters in other parts of the world can only dream about."
-Karen Gurney.
Harry Benjamin's Syndrome (HBS) is an intersexual condition with a basis in neurological,
hormonal, and chromosomal factors. It is thus biological and somatic in origin, not psychological at all.
The main difference between HBS and other intersexual conditions such as Turner’s,
Klinefelter’s, and Kuster Hauser’s Syndromes is HBS apparently passes unnoticed for years until an apparently
sudden onset in adulthood. Recent research indicates that HBS is an intersexual condition such as the ones mentioned, and it is by no means a psychopathology or mental derangement.
Here are the conclusions of William Reiner MD, a paediatric clinician at the
Johns Hopkins University Hospital in Baltimore, Maryland, USA, where he works with children with intersexual conditions:
"In the end, it is only the children themselves who can and must identify who and what they are. It is for
us as clinicians and researchers to listen and to learn. Clinical decisions must ultimately be based not on anatomical predictions,
nor on the "correctness" of sexual function", for this is neither a question of morality or of social consequence, but on
that path most appropriate to the likeliest psycho-sexual developmental pattern of the child. In other words, the organ that
appears to be critical to psycho-sexual development and adaptation is not the external genitalia, but the brain".
To Be Male or Female-That is the Question
151 Archives of Pediatric and Adolescent Medicine 225 (1997)
The human brain is inherently male or female in orientation, as is the configuration
of our DNA. Endocrinologist Dr Louis Gooren reported recent discoveries concerning the structure of the brain made
at the Netherlands Institute for Brain Research in 1995 (Zhou et al.), which were confirmed by another study made in 2000 (Kruijver et al.).
"The recent discoveries about the brain’s sexual differentiation on people with transsexualism (HBS)
could open a door to see this condition in a different way than we see it today. First, from the medical view transsexuals
could be reassigned to their true sex and not be seen as mentally disturbed people.
Second, the medical insurance would be obligated to pay for all medical expenses for the sexual reassignment
as it happens with other cases of intersexuality. The legal system would have to treat transsexuals in the same way they treat
people with other intersex conditions. The rest of the people may change their attitude towards transsexuals, and even religious
institutions would stop seeing it as a sin.
The fascinating consequences of the "biologication" of transsexualism (HBS) in all the domains of Life are
difficult to value."
Louis Gooren MD
Transsexualism, a form of Intersexuality, 2003
Department of Endocrinology, Free University Hospital, Amsterdam, the Netherlands
The recent discoveries of researchers regarding the neurological causes of HBS (Schwaab et coll., 1985 Zhou et al., 1995) have increased our understanding of the role of physiology in our gender identity.
Now, we know that our gender identity is not only defined by our genital structures,
endocrine system (sexual hormones), or genetic configuration (sexual chromosomes), but also by the physical design of the
brain (neurological factors, called in common usage "brain sex"). This gives rise to the potential for more intersexual conditions
than we thought existed in the past.
Besides the neurological factors that are present in HBS, there are other manifestations
of the condition such as hypogonadism or anomalies in the endocrine system. Recent studies suggest there is a genetic basis for HBS as well.
Even before the commencement of HRT, it is common for those with HBS to exhibit characteristics
of the "opposite" sex. For example, many females with HBS exhibit lower levels of the antigen HY (Eicher et al., 1981). These levels would be abnormal in typical males. Other cross-sexual morphological characteristics
are common. Many women with HBS already had clearly feminine features and bone disposition before starting HRT.
Recent research shows us that variation in the length of certain segments of DNA may signify the existence
of HBS. The researchers examined a repeat sequence in each of three genes known to affect the sexual development of the brain. One
particular variant seemed to be significantly associated with the presence of HBS.
Scientists discovered this factor in a gene responsible for producing a molecule
known as ER-Beta. ER-Beta acts as a minuscule gateway that regulates the flow of oestrogen through the brain during foetal
development. The gene that produces the ER-Beta receptor contains a section called a CA repeat sequence. It is called thus
because C and A are names for two "letters" of the genetic code that are repeated many times in a row in this receptor. They found that longer CA repeats had a strong correlation with the existence of HBS. (Read full abstract and text in the section Medical Archives)
A Human Rights report from Australia gives the following explanation of HBS:
Transsexualism (HBS) is now regarded by the world's leading
experts in the field as another of the many biological variations that occur in human sexual formation: an intersex condition:
where the sex indicated by the phenotype and the genotype is opposite he morphological sex of the brain. People with the condition of transsexualism (HBS) are therefore born with both male and female characteristics and,
like many others with atypical sexual development, seek rehabilitation of their phenotype and endocrinology to accord with
their dominant sexual identity; an identity which is determined by the structure of the brain. Transsexualism (HBS) is about being a particular sex, not doing it.
It is also about recognising gender norms, not challenging them.
Karen Gurney and Eithne Mills, 2005
Murdoch University Electronic Journal of Law, Volume 12, nr 1 & nr 2
Most people with intersexual conditions have a definite gender identity as a
man or as a woman. This is the reason they seek gender congruency so desperately. Today, intersexed individuals are demanding
the right to choose for themselves how they wish to express their gender identity and gender congruity. They wish to end the
corrective surgeries done by doctors upon new-born infants, and leave such surgery until such time as the person can make
an informed decision for themselves, much in the same way as HBS is treated at present.
Some groups of intersexual people have refused to see HBS as a form of intersexualism.
Their attitude comes from misinformation, or the survival of old-fashioned stereotypes, not upon solid and reliable scientific
research. We could better classify it amongst some other relatively rare conditions, for HBS is not one of the conventional
intersexual conditions. Perhaps, this situation would ease if there were more communication between these different groups
of individuals.
HBS is not a component of personal identity. Rather, it is a physiological anomaly
that medical treatment brings into congruence with neurological gender. Because of perceived relationships between transsexualism
and homosexuality or transvestism, many saw transsexualism as problem regarding sexual identity; therefore, people saw it
as a psychological aberration.
So many people have become so accustomed to making our condition a part of our identity
that they wonder if we should call people with HBS "Benjaminites". This is absurd. HBS is a physiological condition, and part
of no healthy person’s identity. Women with Turner’s Syndrome do not call themselves "Turner’s women". People
with cancer do not call themselves "cancerites".
We should NOT call ourselves "HBS women" or "HBS men". We are merely men and women
with a definite medical condition. Full stop. Our physiological condition has nothing whatsoever to do with our personal and
sexual identity.
It is more sensible to speak of a person seeking sexual congruency rather than "transitioning"
to another sex. People with HBS who are undergoing HRT, or receiving SAS, are seeking congruence between their neurological
gender and their anatomical structures, they are NOT transitioning from one sex to another, for that is not possible.
In the end, HBS is another biological variation in human sexual formation, and it is not an illness or a medical problem. However, since medical treatment is both indicated and necessary in most
cases an adequate and updated definition of the condition is essential. We must bring the international standard diagnostic
classifications into line with current neurological research for them to have any relevancy.
Three Basic Statements.
- Harry Benjamin's Syndrome is an Intersexual Condition.
All neurological research now points to this as the reality.
- To call someone with HBS a "transsexual"
is contraindicated.
If we care for the emotional health and psychological balance of the individual with HBS, we shall not call them thus,
for their neurological gender never changes, even after SAS.
- Medical treatment to correct HBS is not a transition from one sex to another,
it is a bringing to congruence of the neurological gender and physical structures.
There is no transition of gender, for we can never change this basic
neurological reality.
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