Please
feel free to contact the support group for contact details for your
Representative.
Aims
of the AIS Support Group Australia.
•
To put parents and
people with AIS and related conditions in touch with each other in a safe and
confidential environment and encourage them to seek support and information.
•
To reduce the
secrecy, stigma and taboo surrounding AIS and other intersex states, by
encouraging doctors, parents and society to be more open.
•
To encourage the
provision of psychological support within the medical system, for young people
with AIS and their parents.
•
To put parents and
people with AIS in touch with others and to encourage them to seek support and
information.
•
To increase the
availability of information on AIS both verbal (from health professionals) and
written (from the support group and other sources).
•
To encourage
improvements in the treatment for men and women with AIS in both surgical and
non-surgical means.
•
To encourage research
into Gender Identity and Sexual Identity issues.
Policy
Statements of the AIS Support Group (Australia).
•
That the AIS Support
Group Australia supports
calls for a moratorium on
non-urgent medical intervention. This includes gonadectomies on infants with AIS and clitoral
recession. *1
•
That the medical profession make
every possible effort to overcome the effects of past treatments now considered
inappropriate by affected individuals, including provision for reconstructive
surgeries and on-going hormone treatment and counselling for those incorrectly
assigned. *1
•
That a long term follow-up study of
people treated with intersex conditions be undertaken.
This should include a separate study of those born with atypical
genitalia and had surgical intervention. *1
•
The AIS Support Group Australia supports the full disclosure of a
diagnosis of an intersex condition to the parents and the affected individual at
the earliest possible appropriate time.
•
That disclosure of diagnosis should be accompanied by a complete
explanation of a full range of treatment options available, either for treatment
or the likely outcome of non-intervention.
•
That parents and affected individuals should be advised of the existence
of the support group and medical practitioners should recommend and explain the
benefits of contact with the group.
•
That ongoing medical examinations of affected individuals should not be
undertaken unless the medical examinations are required for some demonstrable
and specific medical purpose.
•
That medical photographs should not be taken except in the cases of
photographs of affected adults taken with their permission.
•
The AIS Support Group Australia strongly recommends further research into
the reasons for greater incidence of low bone mineral density in AIS adults and
the effects of treatment with hormone replacement therapy by oestrogen or
testosterone on bone mineral density.
•
The AIS Support Group Australia strongly recommends that research into
the effects of the timing of orchidectomies on bone mineral density levels in
adulthood be conducted.
•
The AIS Support Group Australia
strongly recommends that any child suspected of being born with any intersex
condition be referred to appropriate specialists in order that an accurate
diagnoses be reached as early as possible.
Notes:
*1
Pediatric Ethics
and the Surgical Assignment of Sex
By:
Kenneth Kipnis, Ph.D.
Department of Philosophy
University of Hawai`i at Manoa
Honolulu, Hawai`i 96822
Milton Diamond, Ph.D.
Department of Anatomy and Reproductive Biology
Pacific Center for Sex and Society
The John A. Burns School of Medicine
University of Hawai`i at Manoa
Honolulu, Hawai`i 96822
Shame …..
By Ruth
Shame,
guilt, disappointment, embarrassment, confusion, isolation, fear! Which of these
emotions did you experience when your child was diagnosed as AIS, PAIS, CAIS, of
indeterminate sex, Testicular Feminisation, Intersex or any other title given to
your child’s condition. I experienced them all over a period of 30 years since
my child was born. Like you, I had no support, counselling or understanding by
the broader community.
What could I tell my parents, family, and friends? If only I had the wisdom
and enlightenment that I believe I have now. Now I am able to say, ”What does
it all matter?” After all, first and foremost, like in every other aspect of
life, is our children’s happiness. Throughout their lives, we make decisions
on their behalf, on what is best for them .In their formative years we decide
their religion, their education, what they should eat and wear etc. We make
these decisions based on advice, opinions of experts, so-called experts, friends
and our own life experiences. We are not infallible. We make mistakes in some or
all of these areas. Why should we expect that we would not make a mistake when
it comes to gender assignment? After all, we were guided by what we thought were
the experts.
When my daughter was in her teens and being a typical, difficult teenager, I
spoke to a variety of people including a spiritualist. I have got to be the
world’s greatest skeptic and tend to “pooh pooh” anything which can’t be
explained scientifically, but she gave me some simple but excellent advice.
Advice which seems so obvious now but was a gem that I have tried to treasure
and embrace since then. She told me “never to close the door” on my
children. Five simple words that I
hope will always allow me to be there for them no matter what.
My daughter and I are very different people. We don’t think the same,
we don’t live the same, we don’t dress the same, and we don’t even eat the
same. We have had many differences of opinion but I hope that she knows that I
am always there for her in times of need and that I support anything she does in
life that satisfies and fulfills her needs (providing it is legal and doesn’t
harm anyone else).
Finally, we have to remember that we brought these children into the world
– they had no choice in that – therefore we have an ongoing responsibility
to them. If our children were born blind, deaf, with a hole-in-the heart or any
other condition, we would do everything we could to ensure them the best quality
of life and happiness possible. How is their gender condition any different?
Our
website recognised as being of “lasting cultural value”.
The
National Library of Australia have been assessing online publications since 1996
and identifying those that they consider to have "national
significance" and that are of "lasting cultural value". Those identified as meeting with their criteria are then
asked for permission to be included in their archives so that "Australians
have access to their documentary heritage now and in the future".
In January, we received an email from the National Library of Australia inviting
us to be included in their archive.
We are obviously very pleased with this, as it reflects the amount of time and
effort many of us have put into the site, and the significant place our support
group has in the history of support for people with intersex conditions here in
Australia. I would especially like to thank those of you who have
personally contributed to the site, especially Andie, Bev, Deb, Garry Warne,
Graham, Elizabeth, Julie, Kylie, Linda Ann, Milton Diamond, Phoebe, Renee, Ruth,
Sarndra, Shorona and Tony.
I understand that this means that anything included in the site will be
available for future generations to see. It also means that our personal
stories of living with AIS and other related intersex conditions will live on.
If anyone would like their
story or an article/poem included in the website, please contact me and I will
include it in the next website update.
Infertility
By Sarndra
As
a young girl I can remember imagining myself with my daughter-to -be (I must
have wanted a girl!) talking about life, teaching her things that I knew,
helping her to understand the world around her and showing her what an exciting
and wonderful place it can be. That feeling of sharing something of myself with a child of
my own was something I was really looking forward to when I became an adult.
When I discovered at 16 that I couldn't have children this dream I had
nurtured was shattered. At the
time, however, I don't think I realised how important that dream was for me.
In fact, I didn't even recognise it as something I especially wanted at
all. I was more absorbed with a
career goal, and focused on that rather than my desire to be a mother.
I managed to put aside the trauma of my diagnosis and surgery and
ploughed on with my jam-packed life without much ill effect.
As time went on and I turned 30 however, my need to be a mother emerged more
clearly. My friends began having
babies and I loved spending time with them and had a baby gallery of photos on
my bedroom wall. They were my
substitute brood. It was only now
that I began to realise that I had pushed away my desire for children and it was
fast catching up with me. I began
to be aware of how much pain and grief was involved in my infertility and
surgery and that I had only begun to touch the surface of it.
During a long period of emotional instability I began to allow myself to
acknowledge and feel my grief. This
was the start of the healing process for me.
I came to feel something of the shock that had hit when I was first told
that what I understood were my ovaries didn't work properly and would need to be
removed. I realised how this
painful blow meant I would never share the experiences of birth and pregnancy
that so many of my friends and other women had done.
I wanted that but it just wasn't possible for me. My abdominal area still felt like it was hurting, even though
the surgery had occurred nearly 20 years earlier.
I also allowed myself to feel the anger and resentment that all of this
should happen to me.
My emotional wounds are taking much longer to heal than the physical one has
done. But something magical began
happening in my life as I let this past stuff come out.
Babies began popping up everywhere in my life, it seemed.
Two years ago my sister-in-law became pregnant and gave birth to
identical twin girls, the first grandchildren in our family.
Everyone felt very happy and proud, particularly myself.
They are both real gems with quite different personalities and behaviour,
which is the main way I tell them apart. I
really look forward to watching them grow up and seeing how they change over
their lives, knowing that our relationship will always be special and important.
Perhaps I'll be able to teach them things about the world that will help
them in their lives and hopefully we'll have a lot of fun together.
Three months after my sister-in-law became pregnant so did one of my
housemates, and I continued to live with her through her pregnancy, birth and
the baby's first two months. I was
awed by the whole process. I got a
pretty good second hand experience of what it was all about.
I loved reading up in the books she had about the stages of gestation,
seeing the miracle of life unfold, and looking at the ultrasounds she brought
back from the hospital. And the
most unforgettable experience….being hypnotised by the baby's eyes while I was
holding him after he came home from the hospital.
Now at 37 I feel optimistic about the future.
At the time of diagnosis I wasn't given any counselling to support me
with my infertility, let alone any of the other issues that all AIS people have
to face. This experience is of
course common for many of us. But
now I realise I have lots of options. I
am still single and don't want to consider adopting a child without a partner,
but that is something I would definitely like to do if it was possible. Previous age restrictions on adoption in Australia seem to
have loosened up recently so I may be able to adopt an Australian child despite
my age. I like the idea of adopting
overseas but feel a bit resistant to the idea of removing a child from its own
culture. It’s a very major thing
to do, although the rewards could be great.
I also like the idea of adopting an intersex child who apparently are
often rejected by parents in overseas countries and put up for adoption.
Children with special needs interest me too, although my energy levels
may not be great enough to give what would be needed.
Short-term fostering is another option I could consider, and might be a
good way to see how I handle the whole parenting thing before doing it as a
long-term commitment.
Whatever I end up doing I now feel confident that I can find ways to fulfil
my need to nurture and enjoy the company of
children, even if it's just with children of friends and relatives.
A lot of what this journey has been about is simply getting in touch with
my feminine side and giving it more acknowledgement, I just have to work at it a
bit more consciously than most women perhaps. Anyway, I look forward to the joys that lie ahead, in
whatever form they may be.
The AIS People
Club in Yahoo
by Danielle Paulette
I would like to introduce
everyone to a great club I have found in the Yahoo Club listings.
It is the AIS People Club and is a safe place for people with Androgen
Insensitivity Syndrome and similar conditions to find help and healing.
The club has been a lifesaver for me and everyone else who have been
fortunate enough to become acquainted with it.
We currently have 46 members and are growing by leaps and bounds - even after
going unlisted (i.e. private) a few months ago. We went unlisted so we can screen applicants to ensure that
only people who have AIS and other related conditions can join. This provides us with a safe, secure place to come and share
our feelings.
Our ages range from a young, intelligent 17year old, to a young &
intelligent 53year old and everything in between.
The AIS People Club is a place where we can join in with others in a discussion
about any subject from when and how we found out we had AIS, to how we cope with
this knowledge and how to help our families and friends understand it.
Everyone is very supportive of one another and we allow each and everyone
to be themselves. We put no restrictions on each other as to their sexual
orientation and gender identity or religious affiliation, etc.
You are free to live, love, and feel whatever the case may be as long as
it is done in a friendly, sharing manner. We
cry on each other’s shoulders as well as have our disagreements from time to
time but it is all done with the utmost respect for each other’s feelings.
The founders of the AIS People's Club are two wonderful members themselves. They are Tony Briffa from Melbourne, Australia and Renee from
the West Coast, USA. These two
founders have created a safe haven for anyone with AIS and similar conditions.
We are now establishing an outreach for teens and their parents that are coming
to grips with having AIS. We seek
to facilitate discussions between parents and their children, and to try to help
them deal with AIS in a loving, supportive, honest way.
We have a few teens and young adults that all have come to grips with the
reality of AIS in their lives and we adults are always more than willing to lend
support and any other help that we can.
We also have many support and information site links in our club including
those to sites on CAIS (Complete Androgen Insensitivity Syndrome), booklets on
Intersex, and some personal homepages of different members.
We have scheduled on-line chats every weekend that are timed so that they are
accessible to people all over the world.
Our times are listed on our website.
Our website that outlines the membership process
is at www.geocities.com/aispeople
. Alternatively, contact Renee at xyin_xyang@hotmail.com
to become a member of one of the best places I know for love and support for
people with AIS, etc.
I highly recommend The AIS People's Club to anyone be it a parent, young teen,
or an adult that is in the process of finding out they have AIS or other related
medical conditions associated with but not confined to just AIS.
Thanks for letting me share our great site with you all. I know it will be
helpful to everyone.
My Journey
With AIS
Virgina
I was born in 1955 with
AIS. At the time it wasn't noticed as far as I know because I was
born very premature and weighed only 4 1/2 lbs.
I had many health problems that the Doctors had to deal with.
Since it was 1955 they didn't have the modern techniques that they have
today such as Neonatal ICU so they were going to let me just die.
I also had to have a complete transfusion of all my blood because I had
suffered a stroke either in utero or right after birth because of the Rh factor
conflict between my mother's blood and mine.
I stayed in the hospital for three months and slowly through prayer,
faith, and the GRACE of God I recovered and was able to come home and am alive
today at 46 yrs. of age.
I do remember being taken to numerous doctors as a young child from the age of
5. I was never given a reason why I
was being examined. I don't
remember questioning it, or if I did I don't remember being given an answer that
is memorable.
Later around the age of 10 (in Aug. of 1966) I was taken by my parents to a
Urologist in Houston, Texas, was examined and told that I would need to have
"surgery". I was told
that I had been born with an inguinal hernia and it would have to be corrected.
I was also told I would have to take female hormones the rest of my life
so I could develop breasts and have all the female curves, etc.
I was told I wouldn't have pubic hair and underarm hair and that I would
grow a beard and my voice would be low like a males and such if I didn't have
the surgery and take the hormones. I
questioned "WHY" but my parents said that is just the way it is. Naturally as a girl at that age I wasn't concerned about this
because you have all faith and confidence in your parents and feel that they
would never do anything to your detriment.
I was put in the hospital at the age of 11 yrs. and surgery was performed
on me. I was given a bilateral
gonadectomy. When I was recovered I
was told that I would not be able to have any children and that I was to NEVER
speak about this to anyone. I
wondered why but when I pushed the issue my parents would get very upset so I
would back off. The only other
thing I was told was that my female organs never fully formed because I was born
so premature and that the pieces that were found could have caused cancer.
The doctor came down during the surgery to the waiting room and asked my parents
if they wanted him to make me a boy or leave me as a female and they said leave
her female because I had been raised thinking I was a female up till then and we
lived in a very small country town where everyone knew me.
They also felt that as a little 11 yr. old girl, it would be too
traumatic for me to come back as a little boy because I was raised as a girl up
until then. We would have had to
move to another state and started all new lives because of the embarrassment and
discomfort my parents and I would have had to face.
I am glad that I had the surgery now and have the life I have but I can't
say for sure how I would have felt at the age of 11 if I had known the whole
story and understood it like I do now. I
don't blame them for having the surgery performed but I DO blame them for not
telling me the WHOLE TRUTH especially when I was around the age of 13 or 14 when
I could have understood it all better I believe.
Then I wouldn't have gone through all the soul searching I have done
since finding out the WHOLE TRUTH. My
Dr. in Houston said when I called him awhile back with more questions that I
reminded him of a person who had just found out they were adopted and couldn't
find out all information about their birth and birth parents fast enough. This is very true too I feel.
I was a happy teenager and believed in my
parent’s love for me and I totally believed in my Doctor who was like a father
to me. I had no reason to ever question what I had been told.
I was a very trusting child.
When I started dating at 15, I was told to not tell my boyfriend anything and to
be a "GOOD GIRL". I knew
what this meant and I had all intents on doing just that.
I did know that I couldn't get pregnant but I had just started dating
this guy so I wasn't about to do anything.
Later as we knew each other more and dated more we realized that we were
going to end up together and I told him that I was certain because of an
operation I had when I was 11 years old that I couldn't have any children and
that if he was going to want a family when we married that we would have to
adopt. He said “fine” and just
questioned me as to why I couldn't have children.
I told him what little I knew of the situation.
I had to use dilators to lengthen my short, blind ending vagina and my
husband-to-be had to be examined by my Dr. to see if we would be able to have
sexual intercourse.
Then in Feb. 1973 we were married and moved to Florida to his first duty station
in the U.S. Air Force. I had never
been away from home and the homesickness was more than I could handle.
I developed panic attacks, and though I didn't know what they were at the
time I know now. My parents and a
state Senator from our home state helped us get a Compassionate Reassignment
back to our home state. During the
time we were writing letters and filing papers for this Compassionate
Reassignment we came across some papers that pertained to me and my condition.
There in black and white were the words under diagnosis, "Bilateral
Gonadectomy". I immediately
called my parents and questioned them on this and of course they denied it and
tried to convince me I was mistaken and that the papers had been on someone
else, but my new husband and myself had read them and there was NO MISTAKE.
I called my urologist and he at first also denied any knowledge and tried
to give me the answers he had given me all those years ago after my surgery, but
finally he realised that I wasn't going to stop digging until I knew the truth,
so he told me the whole truth. I
was devastated because my physical appearance was female and I had always been
told I was a girl and I had always thought of myself as a girl.
I had pubic hair, underarm hair, and breasts and looked totally female!
It later became clearer to me that it was because I had been put on HRT
(hormone replacement therapy) after the surgery at the age of 11.
(It was called Diethylstilbestrol, but I forgot the dose and it was
increased as I got older). I was
very upset, but over time learned to accept it and dug around until I finally
paid to get my records from my Doctor and just consumed everything in the folder
like a starving person seeing food for the first time.
Luckily for me it didn't change my husband's feelings for me in the least.
As far as he was and IS concerned I am his wife and 100% woman.
We have just celebrated our 28th wedding anniversary and are a very
happy, loving couple. We never
adopted any children but we are happy just the same.
I have babysat for a friend's child since her little girl was 3 months
old, and this child will turn 16 in July 2001.
So we have essentially had a child all these years and we love her like
she is ours and she and her family consider us family too.
My husband’s parents think of this child as their grandchild also, and
get her Christmas presents, Birthday presents, Easter presents, and celebrate
every other holiday with her by sending a card, etc.
I know my situation may seem unique, but believe me it hasn't been a bed of
roses. We have made it through a
lot of difficulties and come out on the other side happy and healthy.
Finding the AIS People Club in Yahoo has helped
me find a whole new family to get support, help and understanding regarding my
AIS. I highly recommend the AIS People Club to anyone of any age
that needs someone to talk to for support.
The web site address is www.geocities.com/aispeople.
"The
farther behind I leave the past,
the closer I am to forging my own character."
- Isabelle Eberhardt
Perspectives
By Andie
Perspective
is an odd thing. It is surprising
just how often we hear others say they have looked at a problem from a different
perspective, or that they want to get a clear perspective before challenging a
particular issue. We are also often
left to wonder if indeed they have really taken the time to get a “new
perspective”, or are actually still pushing in the same direction none the
wiser for their efforts.
Over the Christmas and New Year’s break, I
spent time with my family in New South Wales.
Whilst staying at my mother’s place, I was sitting out on the front
porch with a cousin and his daughter, when she noticed something odd making
it’s way across the ground near the house.
We all rushed over to see what is was of course and upon closer
inspection it was found to be a very large wasp that was dragging an even larger
spider across the ground. There was no way this wasp was going to take flight with the
spider, it was just too large and so progress consisted of short bursts of
dragging the spider relentlessly across the ground.
There was no way of knowing how long this had
been going on and we must have then followed the wasp on it’s trek for fifteen
to twenty minutes, joined by a growing number of family members.
The wasp certainly knew where it was going.
Almost unerringly it proceeded around the odd obstacle (like the house)
to continue to a destination that although none of us could guess, certainly was
in a clear direction. Every now and
then, just to make sure, the wasp would take flight for a short time to get
it’s bearings and then return to dragging the hapless victim ever on.
After a while, amazed, we left the wasp to it’s own devices still none
the wiser as to it’s ultimate destination.
Like the wasp, we all have our own battles to
fight. They might be personal issues, they might be issues that
affect others, we might take up these battles for ourselves or for someone else.
Many of these battles we fight will go on for a long time and have the
potential to take a huge toll on us, especially emotionally.
The issues that many in this support group have taken up, are complex and
on-going and have wide reaching ramifications for the intersex, medical and
wider communities. Whilst the
ultimate goals we desire are clear, often the path we start out on gives us no
indication of where we might ultimately end up.
Even those issues we fight day to day on a personal basis, will end up
ultimately showing us the way to helping someone else through the same issues. Computers and other modern advances, mean that we now are
able as people to process more and more information and make more decisions in a
single day than we have ever been able to previously.
It is important to remember though, that each of these decisions takes
just as much consideration, thought and energy as was the case ten or even a
thousand years ago. The result, we
do more in less time and end up feeling more stress at the end of any given day.
There is no magic pill we can take to increase the amount of energy we
can each personally give to achieving that which we desire.
The Cheetah is the fastest land mammal, capable
of speeds in the order of 100 kilometres per hour. The price the Cheetah pays
for this speed is that it may only use it in short bursts as the resulting body
temperature increase in a very short time would kill the Cheetah if it continued
at that speed for any longer time. Like
the wasp and the Cheetah, we are part of the same evolutionary creative process
and like them, bound by nature to have certain restrictions as to what we may
achieve in any given time period. There
comes a time when we must give up the chase for a little while, take flight and
look at what we are trying to achieve and the way we go about it.
This does not mean we will loose sight of where we are ultimately going.
Sometimes it will mean that we see we have strayed from the path, other
times we will see we are still on the right track, either way the end is still
in sight and we will have had time to have a break along the way.
There are many lessons we can re-learn from nature, lessons that we have
put aside somewhere along the evolutionary scale.
Even my orange domesticated money sponge (a ginger cat that is quite a
few steps away from the cheetah on the evolutionary scale), knows the value of
having a rest and conserving energy on a hot day.
We need time with family, friends and partners.
We need to spend time doing just those things we like to do for the sake
of it. Going to the movies, playing
a musical instrument, having a quiet night in front of the television, going
away for a holiday, all of these things give us valuable time for ourselves to
remember just what it is that is important to us and, just as importantly, who
we are.
We will always come up against obstacles.
Like a house to a wasp these will often be huge, but this does not mean
that we cannot find a way around them. We
are very adaptable as a species but need to remember our more humble origins.
Many times just one person has fought and won when the odds were well and
truly stacked against them. It is
sometimes just a matter of taking flight and getting the right perspective
before we continue along the way to our goals.
Hormone
may ease psychotic episodes
By Mary-Anne Toy
The Age (Melbourne)
Thursday 8 March 2001
The natural hormone oestrogen could be a
potent treatment for schizophrenia in women, and possibly men, a world-first
Melbourne study has found.
The study, headed by Jayashri Kulkarni of Monash
University, found that women with schizophrenia given 100 micrograms of
oestrogen in a patch had a substantial reduction in psychotic symptoms compared
with those who received a placebo patch.
The study is being published in Schizophrenia
Research this month.
"Although our results are preliminary and
limited by sample size, the significant improvement in psychotic symptoms with
the addition of (100 micrograms of oestrogen) is striking," the study said.
Australia's leading medical research funding
body, the National Health and Medical Research Council, has given the
researchers a three-year grant for a larger, follow-up study which will also
investigate using smaller doses of oestrogen to treat men with schizophrenia.
The study involved 36 women, mostly in their late
20s or early 30s, with a history of schizophrenia and multiple hospital
admissions.
One group received 100 micrograms of oestrogen,
another 50 micrograms and the control group a placebo patch over 28 days. All
patients were in an active phase of their illness and continued to receive their
usual anti-psychotic drugs. There were no big differences between the amounts of
anti-psychotic drugs the patients received.
The 100-microgram group did significantly better
than the 50-microgram and placebo groups.
Professor Kulkarni, director of the Dandenong
Psychiatry Research Centre, said the findings were exciting because oestrogen
was widely used, in contraceptive pills and hormone replacement therapy, and was
very safe provided the usual health checks were carried out.
Professor Kulkarni said at this stage, the
hormone should be considered as an adjunct to standard anti-psychotic drugs, not
a replacement. Further work is needed to see whether oestrogen can be a
stand-alone treatment.
Professor Kulkarni said the findings also shed
new light into the causes of schizophrenia. The researchers think the oestrogen
worked by mimicking the action of the anti-psychotic drugs. It may also enhance
their uptake which would mean lower doses of the anti-psychotics could be used.
"Doctors
should consider oestrogen supplementation now because there is a possibility of
improving treatment outcomes for women and it may also have a role in preventing
relapses, particularly in women heading towards menopause with a history of
schizophrenia," Professor Kulkarni said.
Research in the early 1990s first suggested that
oestrogen might protect women against the early onset of schizophrenia. A 1993
study found that women with schizophrenia had their first psychotic episode on
average five years later than men.
Other studies
had also indicated that women were more vulnerable for either a psychotic
episode or a relapse at two major periods of hormonal change: after having a
baby and during menopause.
Quality
Of Life Study At The Royal Children’s Hospital, Melbourne
By Assoc. Prof. Garry Warne
A consortium
of researchers from the Royal Children’s Hospital, Melbourne and the Murdoch
Children’s Research Institute (MCRI) has been formed to review the experience
of the Hospital over the past 30 years in the management of children born with
variant internal and external genital anatomy. We are approaching the study with
an open mind and will be quite prepared to review current practice on the basis
of the findings from the study. We aim to be objective in our methodology.
Perhaps the most important aspect of the study is that it will attempt to follow
up all patients treated here and to
obtain an unbiased picture of the outcome. We are interested in overall quality
of life as well as more specific aspects to do with relationships and gender.
The study will include both quantitative and qualitative components.
Funding for the study is through a 3-year Theme
Research Grant from the MCRI. The aim of the MCRI in creating Theme Grants is to
encourage collaboration between groups that do not ordinarily collaborate. Our
group, called the MCRI Sex Study Group or MCRISSG, has the following members
(listed alphabetically):
Dr Sonia Grover: Gynaecologist
Professor John Hutson: Paediatric surgeon
Elizabeth Loughlin MA: Social Worker
Dr Sylvia Metcalfe PhD (Chair): MCRI Education
Officer
David Pereira MA: Psychoanalyst
Mary Rillstone M Health Sci: Project Coordinator/
Research Assistant
Associate Professor Julian Savulescu: Biomedical
Ethicist
Associate Professor Andrew Sinclair PhD:
Molecular Geneticist
Associate Professor Garry Warne: Endocrinologist
At the present time, we are consulting widely
both with other health professionals and with various non-professional patient
advocacy groups as we decide on the outcomes we wish to measure and the
scientific methods we will select to measure them. All diagnoses causing
congenital variations in genital anatomy will be included but we will start by
studying the groups in whom decisions about surgery and gender have
traditionally been the most difficult and in whom a defined diagnosis has been
possible. We have not yet sought approval from the Ethics in Human Research
Committee and so cannot begin recruiting for the study until we have done so. We
very much appreciate the advice we have received from the AIS Support Group
Australia and other groups on terminology to avoid any sensitivities to be aware
of. Your liaison representative is
Andie and through her, we are pleased to receive your views. [emails for
Andie can be sent to aissg@iprimus.com.au
- Ed]
Study on Prenatal Hormone Effects on the Brain
By Shaymaa Elkadi
My name is Shaymaa Elkadi. I am a PhD
student at the University of Melbourne. I am currently conducting a study on the
effects of prenatal hormones, namely androgens, on the way in which the brain
process information. The study is being supervised by Associate Professor Garry
Warne of the Royal Children’s Hospital, in Melbourne, Australia Victoria and
Dr Sonia Grover, of the Centre for Adolescent Health, also in Melbourne.
The study will particularly focus on comparing
the way in which hormonal conditions such as AIS and CAH affect the processing
of verbal and non-verbal information. Little is actually known about the effects
of prenatal androgens on the developing brain when it is exposed
(or not) to the usual levels of androgens in the womb. While there seems
to be a general consensus that there are some effects on the processing and
organisation of information, the nature of this influence remains uncertain.
We are inviting individuals with AIS (both
partial and complete) to take part in this research project in the hope that it
will provide us with a greater understanding of the effects of androgens on the
brain. This will be particularly important in understanding the effects of other
medical conditions in which hormone metabolism is primarily involved.
The study will involve the completion of some
simple tests of visual and auditory processing. The tasks are quite short with
testing expected to be completed in approximately an hour. We hope to do conduct
these sessions at the Royal Children’s Hospital, but it is certainly possible
that we may visit you at home if travelling is not convenient for you.
We would welcome your participation in the study.
The larger the number of respondents, the more accurate will be the conclusions
that we reach. All information given in the study will be strictly confidential.
Each participant will be provided will a report of their individual performance
as well as a summary report of our findings at the conclusion of the study. If
you are interested please contact Shaymaa Elkadi on 03 8344 0399 or 0402 254 184
or by email at shaymaaelkadi@hotmail.com.
Your participation in this study will be greatly
appreciated.
Parents Misled By Sex Chromosome Problem Advice
http://www.healthgate.co.uk/reuters/eline/20010223/20010223elin009.shtml
Monday, February 26, 2001
NEW YORK, Feb 23 (Reuters Health) - Expectant parents who are told their
unborn child has a sex chromosome abnormality may do well to consult a genetic
counsellor rather than relying on advice from their doctor, according to UK
researchers. In a small study, they found that doctors often gave couples
inaccurate information on sex chromosome anomalies and "unnecessarily
raised anxiety" among some parents.
In a study of 29 UK health professionals who had
recently informed expectant parents of a sex chromosome anomaly, researchers
found that many lacked full knowledge of these types of abnormalities. What's
more, interviews with 23 of the parents revealed that some had been needlessly
frightened by their doctors.
All of the parents were given the right
diagnoses, and most later saw a geneticist who explained to them what the
diagnosis meant, lead study author Dr. Lenore Abramsky of the Imperial College
of Science, Technology and Medicine in Harrow told Reuters Health.
However, she and her colleagues found that some
parents were initially alarmed by doctors who either could not explain the
diagnosis or portrayed the anomaly as more severe than it was. They report their
findings in the February 24th issue of the British Medical Journal.
Normally, a person has two sex chromosomes, one
from each parent. Males have an X and a Y chromosome, while females have two Xs.
But sometimes genetic testing reveals that a fetus has an abnormal number of sex
chromosomes, which can result in various disorders that range in severity.
For instance, males may have an extra X
chromosome, which causes a condition called Klinefelter's syndrome. The most
common consequence of this syndrome is infertility. Testosterone therapy can
treat other symptoms such as breast development or decreased muscle mass.
An anomaly in which girls carry an extra X
chromosome often creates no problems. Yet, Abramsky's team reports, one health
professional in the study considered the abnormality to be as
"devastating" as Down syndrome. One parent of a healthy girl with
triple-X syndrome said the initial information she received--over the
telephone--had led her to believe her baby would be severely retarded.
Some people, she told the researchers, may have
terminated the pregnancy without seeing a genetics expert--a prospect she said
horrified her.
The women in the study were mostly in their 40s
and had undergone prenatal genetic tests because their of their age. But most
cases of sex chromosome anomalies are never identified, Abramsky said.
Because the abnormalities typically go undetected
unless a medical problem triggers a genetic test, many doctors may automatically
associate the anomalies with serious health problems, Abramsky explained.
"Most doctors and nurses are only aware of
the most badly affected cases," she said.
Because of this, Abramsky advises expectant
parents to see a genetic counsellor if prenatal tests reveal a sex chromosome
anomaly.
"They should not depend on general
practitioners or obstetricians for this information, nor should they turn to
books, which will be out of date," she said.
SOURCE: British Medical Journal 2001;322:463-466.
“Genetic
engineering with its pre-determination disturbs me. It robs humanity of the unknown factor that makes life worth
living.”
- Jean Luc-Picard,
Captain USS Enterprise NCC1701-D
Prenatal Diagnostic Testing in Victoria 1983 - 1998
By Tony Briffa
In light of the recent discussions on
prenatal genetic testing for intersex conditions, I have obtained and reviewed
the publication “Birth Defects in Victoria 1983-1998” Perinatal Data
Collection Unit, Victorian Government Department of Human Services, Melbourne,
August 2000.
Note: I
do not support the use of words like “defect” or “abnormal” when it
comes to intersex conditions like AIS, CAH, Turners and Klinefelters.
As I am reporting on the facts contained in this publication, I will use
their terminology.
Some statistics in this publication include:
Birth Defects 1983 – 1998
•
213 Turner
•
77 Klinefelter
•
189 Other Sex Chromosomes
Terminations before 20 weeks gestation, 1989 –
1998
•
98 Turner
•
28 Klinefelter
•
39 Conditions due to other sex chromosome anomalies
I have many friends with Turners and 47XXY
(otherwise known as Klinefelter Syndrome) and I am appalled that terminations
are recommend or that they are even classified having a “major defect”.
These friends include academics, a retired politician and schoolteacher
(who was knighted for his service to the Parliament), Engineers etc.
I am concerned that women who are told they have a child with in intersex
condition are being told that their child will have major abnormalities without
even contacting the relevant support groups and meeting some adults with the
same condition that their child has.
There are still many doctors who refuse to let
teenage and adult patients know about the presence of support groups, just as
there are doctors who withhold the full truth about a child’s intersex
condition from their parents. Given
that this is the case, what are the chances that some doctors will be upfront
and completely honest with a woman who is pregnant and who may consider
terminating a child with this “major defect”?
I know not all doctors would recommend this, that didn’t stop the
termination of 165 children with intersex conditions in a ten year period in the
state of Victoria alone.
There recently has been has been talk of
screening for AIS along with other “major defects” such as Down Syndrome,
Cystic Fibrosis, and Spina Bifida. I
am personally against this, and think of all the wonderful friends I have with
AIS all over the world and how much they have added to my life and that of all
their friends and families.
In case of prenatal genetic testing I have to
agree with Garry Warne’s comments of dAISy September 2000 “It is a mistake
to focus too much on the medical aspects of AIS.”
(Dr Warne is also personally opposed to genetic testing for the
termination of intersex infants). I
believe that screening for AIS will lead to the further medicalisation of AIS
and those of us with it without any benefit to our lives, while culling future
generations of our special AIS siblings.
I would rather see a focus on improving our
quality of life with an emphasis on counselling, support, research into
osteoporosis, fertility and hormone therapy, truth disclosure, improved surgical
techniques for adults wanting vaginoplasties or phalloplasties, increased
knowledge and emphasis on non-surgical dilatation,
legal status of people who identify as intersex (i.e. not exclusively
male or female), public education programs on AIS and our issues, etc
“Testosterone Revolution” Urged for Older Men
By Anne Harding
Monday December 18 2000
NEW YORK (Reuters Health) - Testosterone supplementation could one day help keep
men fit, active and happy well into old age, just as estrogen lends vitality to
postmenopausal women, a doctor suggests.
Between age 20 and 70, a
man's testosterone level may drop as much as 50%. A growing number of medical
professionals refer to this decline as "andropause" - analogous to
menopause in women.
However, hormone replacement
therapy for men remains controversial. Some researchers suspect extra
testosterone could spur the growth of prostate cancer, and the illicit use of
the hormones by bodybuilders and other athletes has also tainted its image.
According to Dr. Malcolm
Carruthers, carefully monitored testosterone supplementation for men deficient
in the hormone is safe and has many health benefits.
"It's not only okay for
the prostate; it's actually good for the heart and circulation, prevents
osteoporosis, and has many of the benefits - including possibly preventing
Alzheimer's - that female hormone replacement therapy does," Carruthers, a
physician and chemical pathologist in private practice in London, told Reuters
Health.
Carruthers has launched a
charity, The Andropause Society, to study and support research in this area. He
is also a consultant to AndroScreen.com, a Web site offering information on
screening for testosterone deficiency and access to treatment, and is working on
building a worldwide network of doctors trained in treating testosterone
deficiency.
Indeed, a growing body of
evidence supports the idea that testosterone supplementation for men with low
levels of the hormone can strengthen bone, increase muscle mass, improve
cognitive function and libido, and fight depression, according to Dr. Natan Bar-Chama.
Bar-Chama is director of male reproductive medicine and surgery at the Mt. Sinai
School of Medicine in New York.
"The field of andropause
is in its early stage," the New York researcher told Reuters Health.
"We're probably a decade behind as compared to the field of
menopause." He said he expects interest in this area to grow
dramatically in the next 5 to 10 years.
Although long-term studies on
the risks of testosterone supplementation are not yet complete, Bar-Chama said,
early results do not suggest it carries an increased risk of prostate cancer.
New testosterone gels and
patches have made testosterone supplementation safer, Bar-Chama added. These
medications increase testosterone but not beyond physiologically normal levels,
as pills and injections have the potential to do.
Deciding who would benefit
from testosterone supplementation requires looking at symptoms as well as
hormone levels, both doctors agree.
Testosterone levels vary from person to person, and a man with normal levels may
have symptoms of deficiency. These symptoms include depression, loss of interest
in sex, poor mental function, osteoporosis and reduced muscle strength,
according to Carruthers.
Evaluation of many factors,
including muscle/fat ratio, bone density, mental function and sexual
performance, is necessary to determine if a man needs extra testosterone, Bar-Chama
said.
Testosterone's benefit of
reducing fat and increasing muscle mass is not just cosmetic, he observed.
Trimming fat and adding muscle can help prevent or slow the progress of heart
disease.
"There are many men who
can benefit from testosterone supplementation," Bar-Chama said.
"There are tremendous benefits but there are also risks."
As the field of andropause
develops, Bar-Chama predicts, doctors will more clearly define these risks and
benefits and begin to reduce these risks, just as researchers working on
menopause have worked to shrink the side effects of estrogen supplementation.
Factors
Determining Sex Of Individual For Marriage (UK)
FAMILY
DIVISION
http://www.thetimes.co.uk/article/0,,26888,00.html
W v W (Physical intersex) Before Mr Justice Charles Judgment
October
10, 2000
Where an individual was not a transsexual but a physical inter-sex in that the
biological sexual characteristics at birth were ambiguous and not congruent,
other factors, including psychological and hormonal factors and secondary sexual
characteristics, should be taken into account when determining the sex of that
individual for the purpose of marriage.
Mr
Justice Charles so held in the Family Division when dismissing an application by
Mr W for a decree of nullity in respect of his marriage to Mrs W on the ground
that, at the date of the marriage, Mrs W was not a woman.
Miss
Suzannah Cotterill for Mr W; Mr Martin Ward for Mrs W.
MR
JUSTICE CHARLES said that the parties had married in 1993. A decree absolute had
been granted on Mrs W's petition in 1997 and there were ongoing ancillary relief
proceedings.
Mr W had not contested the divorce but he now sought a decree of nullity on the
ground that the parties had not been male and female respectively at the time of
the marriage.
His
Lordship had found that, while Mrs W's chromosomal characteristics were male and
her gonadal sex probably male, she had been born with ambiguous genitalia, and
her gender orientation was female.
Although
registered at birth as a boy and despite treatment with testosterone injections,
from her early teens her general appearance had been more female than male and,
from the time she was able to choose she had lived day to day life as a female.
In
1987, following oral oestrogen treatment, she had had gender reassignment
surgery, without which, his Lordship accepted, she would have been unable to
have sexual intercourse as either as man or a woman. She was in any event
sterile.
The
factors or criteria for determining a person's sex for the purpose of marriage,
as set out in Corbett v Corbett (orse Ashley) (1971) P83), were biological and,
if the gonadal, chromosomal and genital tests were congruent, that was
determinative of the person's sex.
Here,
however the expert medical evidence of a consultant
endocrinologist had been that the biological factors were not
congruent; while Mrs W's genetic and gonadal sex was male, her genitalia were
ambiguous and her body habitus and gender orientation appeared female.
The
most likely diagnosis was that she had partial androgen
insensitivity syndrome, in which mutation of the androgen receptors failed to
"see" testosterone, causing her to be in a physical intersex state.
There
was no authority concerning a person with a diagnosis of partial androgen
insensitivity; the cases of Corbett and S-T (formerly J) v J (1998) Fam 103)
were both concerned with a transsexual, although Mr Justice Ormrod in Corbett
recognised the difficulties that existed in cases of physical inter-sex.
In
his Lordship's judgment, having regard to the history and the medical evidence,
Mrs W's characteristics were not congruent in the Corbett sense and the
biological test set there was not satisfied, nor did it provide the answer
whether Mrs W was a female for the purposes of marriage.
In
a physical inter-sex case, as here, the decision whether the
individuals involved were male or female for the purposes of marriage should be
made having regard to their development and to psychological and hormonal
factors and secondary sexual characteristics, in addition to the chromosomal,
gonadal and genital factors listed in Corbett; in effect, with the benefit of
hindsight, looking back from the date of marriage or, if earlier, the date when
the decision was made.
Having
accepted the diagnosis of partial androgen insensitivity, its cause and effect;
evidence of the ambiguous external genitalia; evidence of Mrs W's development
which had led to her making a final choice to live as a woman well before the
oestrogen treatment and the gender reassignment surgery; and finding that she
had had the capacity to consummate her marriage to Mr W, his Lordship was
satisfied that Mrs W had been a female for the purposes of her marriage.
Solicitors:
Buss Murton, Tenterden; Ms Bonneton De Sarlat, Cranleigh.
Good Medicine Magazine (Australia) discusses AIS.
Those
of you that are regular “users” of commercial television, will be aware that
Channel Nine screens a programme called Good Medicine and that there is an
accompanying magazine available at most newsagents. In the April edition of Good Medicine magazine is a short
side bar article titled “gender assignment” (their “capitalisation”,
Ed.) which provides a reasonable but simple explanation of AIS.
There is no doubt that the article “gender
assignment” is titled to attract attention despite the fact that many issues
other than surgical assignment are discussed.
The article is part of series that are linked by a common theme of the
right of patients or their parents to know all relevant information when making
choices about treatment. Focussed
primarily on the issues of surgical intervention and disclosure, the article
makes clear that people with AIS may be born looking male, female or anywhere in
between. Timing of gonadectomies and subsequent commencement of HRT
are raised as issues in the article, along with the medical responsibility to
provide adequate counselling for parents of children with AIS.
Also explained is that most children with AIS are raised as women and
that girls may not be diagnosed with AIS until puberty.
Our President is featured in this article and is quoted regarding
surgery, disclosure and HRT.
Good Medicine is an Australian Consolidated Press
publication and enjoys wide circulation. The
magazine focuses principally on Women’s health issues and should give AIS good
exposure with the contact details for the AIS Support Group Australia included
at the end of the article.
•
Intersex in the Age of Ethics
By Alice Domurat Dreger (University Publishing
Group, 1999, ISBN 1-55572-100-1).

•
Lessons from the Intersexed
By Suzanne J. Kessler (Rutgers University Press,
1998, ISBN 0-8135-2530-6).

•
Orchids
By
Karen Traviss
A fictional story
about the life of a woman with CAIS.
http://pages.prodigy.net/sullydog/archives/astory18.htm
Letters..…...
I
have received several letters from members regarding various issues, and would
like to include several quotes:
“AIS is more a social than medical problem. The biological facts of
intersex are indisputable, forced integration into the male/female mould will
always feel like personal rejection to some of us.”
“Legal recognition of intersex is the most basic and most urgent step
needed to give everybody the freedom to develop a role for themselves.”
“My husband died of cancer before I found out about having AIS.
Suddenly my marriage – my pride and joy in personal achievement – had
a doubtful validity. I was
devastated. ……It was only after the tortures of the past three years that I
have accepted that “what might have been if” does not alter the fact that we
had 18 ½ years of exceptionally good marriage.”
“If the medical profession could convince their legal brethren of the NEED
of a legal intersex status, I think they would do much more good than with any
genital reconstruction.”
“How wonderful to receive a reply from Garry Warne as fast as this.
Hopefully my story, along with others, reinforces the need for better training
for doctors with regards to intersex patients.”
And from an Australian medical practitioner who is an expert in gender
identity:
“The practice of surgically assigning gender to an intersex infant just
because it is anatomically convenient, is simply not acceptable.”
The
Original AIS Support Group Invites Other
Groups To
Form A Consortium.
In the current issue of the AISSG UK newsletter,
the following paragraph appears that refers to the AIS Support Group Australia:
“Australian Group
Someone who joined our Australian branch in early
2000 has now taken over the group and decided, in mid-2000, that they should be
independent of AISSG . Both we and Garry Warne have advised them to adopt a new
name, to reflect their independence and differing focus.”
As many of you would be aware, this summation of
the situation contains many remarks that are at best ill informed and at worst
very misleading. At the time the
“decision” referred to took place, Elizabeth was our President and had been
well prior to “early 2000”. An
interim committee had been formed in early 2000, and in July 2000 the committee
simply re-iterated our point of view that the Australian Group had always
been independent and never a “branch” of the AISSG UK, a view confirmed
to have been held by Mary, our first leader.
This point of view was unanimously held by all members present, including
the President, Secretary, and two State Representatives.
Garry Warne has also been mis-represented in this
paragraph as having sided with the AISSG UK. Despite efforts by committee
members to resolve certain issues with the AISSG UK, it became clear that
independent mediation may be needed. To this end the AIS Support Group Australia
asked Garry Warne to help negotiate. In correspondence shared between him and
committee members at the time (which is archived), it was made clear that
suggestions on his part were simply that as he did not believe it was his place
to tell any group what to do and that they were made to help “keep the
peace”. He also made it clear at the time and again more recently that he
wished not to take sides in any disagreement between the two groups.
Officially, the Australian group is known as the
AIS Support Group Australia in line with other intersex support groups in
Australia and in keeping with the name we have had since at least 1990 as
evidenced in medical records written by Garry Warne at the time.
(We were also known as the AIS Discussion Group for several years from
1986). The abbreviation “AISSG” is used in such things as our
e-mail address and website address due simply to space restrictions and both are
Australian based accounts ensuring we have taken all steps possible to avoid
confusion with the AISSG UK.
It has been suggested elsewhere, that [we]
“wanted to continue to use the name AISSG even though you were no longer part
of the international consortium of AISSG support groups”. A consortium suggests a collective of groups of equal standing
and common purpose working together. It has always been the case that the AIS
Support Group Australia has desired this outcome, but when we suggested that we
were a collective of sibling groups as opposed to branches of the UK
“parent” (or “head office”) group, this view was disagreed with and
perceived to be a “declaration of independence” on the part of the AIS
Support Group Australia.
The AIS Support Group Australia holds the view
that such a consortium would assist determining the best way of supporting all
people with AIS and related conditions, but any such arrangement must respect
that groups will have differing points of view and tailor the operation of their
respective groups for local requirements.
The AIS Support Group Australian invites contact
from any interested groups such as the AISSG UK or US to discuss further the
idea of an international consortium of groups committed to supporting those with
AIS and related conditions.
AISSG(UK)
& ALIAS …...
Those wishing
to subscribe to the AISSG(UK)’s newsletter will have to do that directly with
them. They
will not permit us to have a group subscription, removed our contact details
from their site, and have described our group (on their website) as “an
Australian group that supports men with PAIS and other conditions”.
I
strongly recommend those who subscribe request that the AISSG(UK) correct the
description of our group and our contact details, as well as acknowledge that
our group includes everyone with AIS and related intersex conditions regardless
of gender. We
certainly do have many AIS women members, and to not acknowledge them is
insulting to people with AIS everywhere.
The subscription fee is around AUD
$30, and their address is:
AISSG
UK
PO Box 269, Banbury,
Oxon, OX15 6YT
England
Quote
From Johns Hopkins.
In
April, the annual gathering of the Lawson Wilkins Pediatric Endocrinology
Society heard Claude Migeon of Johns Hopkins present initial findings from a
follow-up of a handful of adults with partial AIS. He revealed that most of
those assigned male had clearly male identities and had fared quite well,
contradicting the standard prophesies of doom. He acknowledged his regret to
conclude that genital surgeries never produce perfect results, in either male or
female assignment. Asked what sex assignment he would now recommend for infants
born with PAIS, Migeon responded, "Ten
years ago, I would have said raise them all as female, without any question, but
today, I have no answer."
Next
Meeting:
We
are having
a meeting in Brisbane on the weekend of the 26th and 27th
of May. I
will send out the details on a separate leaflet.
Please contact Tony or your Representative for further information.
Deadline for Next Newsletter:
1st August 2001.
(Everyone
is welcome to submit articles for publication)