Living With XXY/Klinefelter Syndrome

I was born in 1960, the youngest and 12th surviving child of at least 13 children. My mother was 44 and my father 47.I had 2 x's instead of one, destined to be gay and born into a strict Irish, Roman Catholic Regime.......need I say more!.

There had been a three and a half year gap between my brother George and my arrival into the world.
George has Downs Syndrome and has always required round the clock care.
For most of my life it was expected that I should take my turn looking after him. For most of my life I have
been barely able to look after myself.

My childhood up to the age of 12 is sketchy, but verbal and physical bullying at school was a common occurrence.
I was alway's 'camp'. This was as naturaly a part of me as my (once) blond hair and blue eyes, but I didn't know I was camp,
I didn't know (as such) that I was gay,(for the expressions "camp" and "gay" had entirely different meaning's to me other than those associated with homosexuality.
Homosexuality was a subject I knew nothing about. In fact sex and sexuality were subjects I had never encountered.

I certainly knew I was different, but could never put my finger on any one thing.
Extremely shy and introverted, I kept all the hurt and pain securely locked inside,
where it all remained festering till I reached the age of around 32.

As previously mentioned, my childhood years to age 12 are sketchy and I can remember practically nothing up to that age.
Despite asking the family for any information they could remember from that period,nothing of any significance has ever come to light.
I do however remember consistently being in trouble and the frequent, and often humiliating experience of going over my mother's knee for a sound, bare bottom thrashing, which lasted well into my mid teens!

On many of these occasions, I did not even know why I was being punished. Many years later I was to discover that the reasons for not knowing were because of AD/HD, coupled with Short Term Memory Loss. I was shy and extremely introverted, didn't make friends easily and whatever friends I did make, eventually would abandon me. I could never understand why.
However I understand now, but it still happens!

Being verbally abused, taunted and physically abused were a regular occurance throughout my schooling years.
Every day I lived in fear,but I never had the courage to tell anyone.
At the age of 38 I began a journey of discovery and began to find the answers to a lifetime of questions.

Many of my problems,frustrations and naivity were attributed to a genetic malfunction.

My secondary school years were brought to an abrupt end at the age of 13. Having spent 1 year at St. Vincents college in Langbank, Renfrewshire, which was a junior seminary.
I had no interest in ever becoming a priest. It was a golden opportunity to break free of the bullies who had made my life miserable at primary school.
What a very naive young man I was.

The bullying at this school was 10 times worse than ever before, to the point that suicide seemed the only option. I had just turned 13, and I wanted to die.

Running a gauntlet was an almost daily occurence,a line of seniors kicking me as I ran through the gauntlet.
They found it hilarious and even had a name for their evil practices, "First Year Resistance". Our teachers (Catholic Priests) were fully aware of "First Year Resistance", but never did anything to outlaw such practices.
They were deemed, to be "Character Building"!

This was a time when the majority of pupils would either have started their pubescant period, or just beginning. Not for me, I would have to wait 20+ years, before experiencing puberty for real.
I don't know how else to explain what I mean by that
except, that although puberty began around the age of 17, my secondary sexual characteristics would not begin to develop
until I had attained the age of 38.

Senior pupils urinating (or worse) on my bed, just before 'lights out', was periodic. I had no choice but to sleep in it and then face the consequences.
There was little I could do about it. I didn't have the courage to tell anyone and to 'squeal' would have meant further abuse.
It was just something else they could add to their list of taunts.

I was forced to take part in sports that I had absolutely no interest in, nor had the energy to sustain.The ultimate humiliation however, was having to use the communal showers. Surrounded by 12 - 15 year old pubescant teenagers who could see my very imperfect naked body and the genitalia of a 5 year old,
which in turn they would use as a weapon to further reduce my very low sef-esteem.
I hit upon an idea, to get out of having to take a shower and when I look back on it now, it was pretty horrendous action to take, but a useful one because the ends justified the means at the time.
With excrutiating pain,I would dig my fingernails into my scalp and make it bleed. Owing to my 'head injury' I was allowed to have a bath in private.
This privelege however came with it's own heavy price, because 'teacher's pet'was added to the list of taunts.

I won't go into any great detail, it's a part of my life that was quite horrendous to endure, but has
given me the strength to be able to tell the tale some 30 years later. Ironic though that our society is only
now facing up to the problem of school bullying. (circa 2002)

After a letter I wrote to my mother was intercepted by my HouseMaster,(the contents of which were geared towards suicide)
I was swiftly removed to the safer confines of the family home.
I found out from my father many years later, that my mother never received that letter. I had planned to throw myself under a train and had planned it down to the last detail.

When I returned home, my next school was to be the very school I was trying to avoid. It was a very stressful time, and the upshot of that (owing to continual bullying) that I started suffering from blackouts.
In a very short space of time, I was placed in an adolescent unit for kids with behavioural problems. Academia was not a priority here, psychology and psychiatry though, were very high on the priority list.

Twice weekly I would be grilled by a panel of shrinks, but I was so introverted, I would'nt open up to them. On some of these grilling sessions, my parents would also be present.
I learned very little in my secondary schooling years. It has taken many years of self-teaching to master spelling and arithmetic.
In the next 3 years I don't ever remember being taught anything apart from snooker, billiards and how to fire a pot in a kiln.
I left school at 16 with no qualifications, and still absolutely no clue as to what was so different about me.

I drifted from dead-end job, to dead-end job, with lengthy periods of unemployment in between. All this time, I was dropping deeper and deeper into depression.
Since the age of 16 I have been in paid employment for a total of 13 months over a period of 11 years from 1977 to 1988. I have been long-term sick since 1988 with *depression and anxiety, *chronic fatigue,*glaucoma,*diabates and *attention deficit disorder (including short term memory loss).
All those marked with an asterisk are or may be associated with Klinefelter Syndrome.(see more below)
However, despite the fact that these illnesses are or may be associated with to Klinfelters, my physicians continue to treat them individually instead of collectively.

In 1988 I was diagnosed with Klinefelter Syndrome, the result of an Intersex condition known by it's chromosomal signature,
47,XXY. The most common chromosome variation currently known to medical secience.
It affects between 1 - 500 to 1 - 700 live male births and not the 1 - 10,000, as some doctors would have you believe.
Detection however is rare.
By comparison, Downs Syndrome affects 1 - 1,000.
Since diagnosis I have been treated abominably by a health care system that is uneducated in this syndrome and in many of the 98 known Intersex conditions. Given that so little is known about these variations, it beggars belief that they are playing around with genetics!
I began Testosterone Replacement Therapy, the male equivalent of HRT approx. 1 year after being diagnosed and it came in the form of 100mg of testosterone cyapionate every 4 weeks.
This regimen continued for a further year, when I was advised to go onto testosterone implants, because long-term use of injections can cause the muscle tone to break down - there may well be some truth in this, but the alternative is no alternative. At this time I have some kind of muscle wasting condition that appears to be a great mystery among my physicians.
Considering it was a physician (now retired) who told me that it could break down the muscle tone
and I have brought this to the attention of my current physicians (2002), it makes me wonder who is right?!?!

For the following 8 years the dose was 600mg every 3 - 4 months by way of implants.
I was informed at that time about the symptoms of Klinefelters: Infertility, small testes and Gynocomastia. Nothing more, nothing less. Approx. 5 years ago I had liposuction to reduce my breasts.Then I was diagnosed with Glaucoma, even although for several years beforehand I'd had all the symptoms of glaucoma, but no trace of the disease itself.
Interestingly though in later years scientific research would reveal a link between TRT and Glaucoma.
The blackouts I had suffered from in my early teens, never turned up any kind of diagnosis. All tests were inconclusive. The blackouts dwindled from 5 or 6 times a week at their height to 1 or 2 since the age of about 25.

It has only been since mid 1999 that I have had the opportunity to answer many of a lifetime of questions, but none of these answers have ever been volunteered by any doctor or other health professional in the UK, I have had to fight tooth and nail, and the battle has only just begun.

I "came out" of the gay closet just one month short of my 30th Birthday and despite being shy and introverted, I plucked up the courage to contact the Glasgow Gay Switchboard after 20 odd agonising years of being in the closet with no one to discuss my needs and/or fears with.
I arranged to meet someone from switchboard who introduced me to a group called ICEBREAKERS where I met some good people. Another group, OUT ON SUNDAY followed on from there.
At both these events I had heard many people complain that Glasgow did not have it's own Gay Community Centre, unlike other cities such as London and Manchester. At this time I was very much quiet, shy and introverted, but I am someone who enjoys a challenge and organising is in my blood.
So I took it upon myself to do a little research into the possibility of setting up a community centre to serve the gay and lesbian community of Glasgow and surrounding area's.
In the fullness of time, on the 17th March 1991,the GLCwas launched.

Although I personally left the GLC after 2 years for personal reasons, my fellow GLC committee and members went on with the necessary fundraising and awareness raising and with 4 or so years of blood, sweat and tears under their belt, the centre was opened in 1995(?)and now into 2000 and into the 21st century, offers it's services to it's ever growing clientele.

Having spent 10 years seeking therapy from the NHS and finding none suitable, I decided to seek therapy in the private sector. It has been a great financial struggle and is still ongoing. In 1997 I was diagnosed with Diabetes. I am rarely able to sleep properly, and I have suffered from extreme fatigue for years.

I never seem to fit into any kind of peer group. As an almost 40 year old man I am deemed by society to mix in the company of those who are middle aged, but my head tells me that my peer group are 16 - 20 year old's, since my pubescant period was kick started approx 18 months ago, and our 'caring, sharing' society would deem that as some kind of perversion, and let's face it, there aren't many 16 - 20 year old's who want to hang around with a 40 year old queen!

My sex life has been disastrous as a result of xxy and the disgraceful lack of knowledge on the side of the medical profession. (I have a copy of a letter written by a doctor in 1978, suggesting that I may have a chromosome anomaly. It took a further 10 years before anyone took up the thread). I am a gay man with a small penis, that doesn't work too well and because of bowel/anal problems I cannot take part in any form of penetrative sex.
The stress of this alone is often extremely difficult and many relationships have ended because of these problems. Maybe I should have been a nun!

I would give my right arm to be fit enough to hold down a full time job, but no one is ever likely to employ me, as I could not guarantee to be reliable. I never know from one day to the next whether I will leave the house or not. Thanks for listening.

Steph T Dec. 1999.
(Updated 2002)

Chapter Two

A lot of water has flown under the bridge since then. I have discovered that all through my life I have suffered from Attention Deficit DisorderADD information here and have always had short term memory loss. All through primary school, my report cards would declare that I was lazy, not paying attention, didn't apply myself, could try harder etc. No one ever dreamed that it could be genetic. And in the days when I was at school, the Lochgelly tawse was very much still in use. I was belted on a regular basis for things like "Not paying attention".

To give the reader a little insight to my condition, everyone has a karyotype, which at conception will determine your gender and genetic makeup. Male =46 XY, Female =46 XX. I have the karyotype 47 XXY. That little extra x can cause untold problems. Klinefelter Syndrome develops beyond when puberty is supposed to begin.Only time will tell what problems may be avoided by early diagnosis and treatment. My pubescant period started around the age of 38. One of the good things about being on HRT,is that it keeps one forever young looking (so I'm told), it's wonderful as an anti-depressant, but it hasn't done much for my fatigue. I have though managed to grow a beard for the first time in my life.
It helps to keep bones healthy and organs such as the kydneys, Liver and Prostate. However like all drugs it can have unpleasant side-effects.

For the 8 or so years that I had been receiving tesosterone implants (and being naive about any other form of treatment) it turned out in the fullness of time that I had not been getting enough testosterone with this form of treatment. It was only in the USA, when I was there in the summer of '99, attending the Klinefelter Syndrome and Associates National Conference, I discovered other forms of treatment - notably injections. Suffice to say that having kicked my Doctors' proverbial ass, I have been receiving testo shots for almost 6 months, and what a huge difference they have made in my life. Depression has become a thing of the past for me and my sex life has improved beyond my wildest dreams.(except there is no one to share in it.....yet)!
Upon my return from the USA I took up active involvement withKlinefelter Organisationand now sit on the committee as the Gay Liason Person and Social Organiser.
In December 1999 I started a College course doing an RSA CLAIT (Computer Langauge and Information Technology), which I am now half way through.More below.

Now the search is on to share my new found happiness with a handsome bachelor!.

Steph T May 2000

Chapter 3......

You may be thinking in reading the above, that all is doom and gloom. On the contrary. It may have been that way for many years, and granted, many of the emotional scars remain, but I am the person I am for having experienced the kind of life I have had. So many of my experiences, although frightening at the time, have put me in good stead for whatever lies ahead.

I'll not deny that I am waiting for Mr. Right to come along and sweep me off my feet, but it has to be someone with a lot of patience, compassion, sense of humour - (preferably dry humour) and who is adventurous behind closed doors!

I enjoy nothing more than a walk in the wide open countryside, preferably on a warm spring/summer day, with a nice country pub in which to wind up a perfect day. Of course such a day is even sweeter with a young man on my arm.
I also enjoy live theatre, plays, drama. My musical tastes are varied, but my number one love in music is Irish Traditional, particularly from Donegal. I also enjoy (dare I admit it) Boyzone, Patsy Cline (what queen worth her salt wouldn't), Chris De Burgh, Jimmy Somerville, Mary Black, Nanci Griffith, Michael O'sullivan, Bach, Handel, etc. I can't abide heavy rock, I like some dance numbers, adore ceili dancing........open to pastures new. I am 98% non-scene and prefer 'mixed' establishments, although I may, on a very rare occasion, go on a bender and hit a gay nightclub and get totally off my face.

13/05/00

I thought it might be time, while I have an hour to spare, to add a little more.
Up until the beginning of 1999, I had yearned for many years, the opportunity of having a 'shot' at a computer. At that point in time I had never laid a finger on a computer keyboard. I had of course used an electric typewriter, but computers were always something that had eluded me.
An elder brother came 'home' to take care of my dying father and brought his lap-top with him and in the few and far between moments that he had to spare, he taught me the basics of this 'box of tricks'.
I took to it like "a duck to water".
Shortly afterwards I learned of a Glasgow Agency, Scottish Employment Opportunities who specialise in assisting people with disabilities to find suitable educational courses and/or gainful employment.
They introduced me to the Leonard Cheshire Foundation Workability Project, which was set up to allow people with disabilities the opportunity to do a distance learning course via the WorldWideWeb, entitled RSA CLAIT - Computer Langauge and Information Technology. Having been accepted by Workability, I received my very own computer with which to the course, and assigned an on-line tutor. His name is Alan, and he must have the patience of a saint. I expect that I have pushed his patience to the limit sometimes.
For more information on The Leonard Cheshire Foundation Workability Project, see the link above.
I am about to sit my 3rd exam on the course. Whether or not I pass the course remains to be seen, but I will be forever indebted to LC for the opportunities that are now available to me.
And here I am now building my own website, as well as other websites that I have involvement in. It's great fun!

I have just been looking at my calendar and I see Alan is away for a week beginning Friday - Oh goody, no study next week then!!!!. So what, I hear you ask, dear reader, am I like.
Well, I am 5" 9", 12 1/2 stone, my weight unfortunately is dis-proportioned and most of my body fat is around my belly, an unfortunate trait of being xxy and no amount of dieting or exercising is going to shift it, but many a man has laid his weary head upon it, so it is useful.
I'm a kick in the ass off 40, but could pass for 36 (so I'm told), sometimes I feel more like 140, but 'that's life'. I have a wild sense of humour and tend to see the funny side of life. There was a time in my life in the dark days of depression when I never thought I would ever look back upon it and see the funny side, but I'm sure you'll excuse me while I pat myself on the back for geting this far.

24th May 2000

Approximately a year has gone by since I started "my story" and even more water has flown under the bridge since then (no pun intended to those readers who live on or near flood plains).
If you have, or think you may have Klinefelter Syndrome and want to talk with other's, I moderate an on-line Klinefelter Community (see link below)

December 9th 2000

Well we are now into June 2001, and just in case you missed the news - The Millenium Bug never happened
The Millenium Dome was a joke ( a very expensive joke).
Another joke got into the White House and the least
said about that the better!
New Labour returned to power in another landslide victory with
the Tories trailing behind with their legs between their tails.
One leading Tory MP was overheard saying, "I think we have done something terribly wrong"!
Aye, his name was Hague!
And so ended another joke.

And as for me, well I have moved on a bit more, I am pleased to say.

14th June 2001

What's it like....................

People often ask me, "what's it like to have Klinefelter Syndrome"?
A good question, I ask myself, because it's not an easy subject to try and explain
particularly when I only know a fraction more than they do

I have and have had many, many problems since the age of 12. Through those many and dark
years it has been one struggle after another, too many and too much to put into one chapter
so, I will begin with chapter one, where we will look into what it is like to be born with a bad
memory.
Please bear in mind that what I write here is from my own personal experience and the
experiences of a number of discussions I have had with other people who also have the syndrome.
And there is probably a
shorter way of writing that last sentence, but I don't know how!
So this is my life and does not reflect the lives of everyone with Kliinefelter Syndrome.
We are just like all of humanity, we are all different, although we share a common bond.
Only research can
prove or justify one way or the other if the commonalities between us are directly attributed to the
syndrome or not.

Memory Loss:
***********

It's not unusual for some people to have a bad memory. In most cases, the older you get can play a big part
in loss of memory. I however have been like this since birth. Can you try to imagine if you had been born with a Genetic malfunction, that causes
what has been termed, "Verbal Dyslexia"!
What in the name, is that? I hear you cry!
I will attempt to explain

Whenever anyone say's something to me, if it's less than 4 words then there is a good chance that my
brain will recognise what has been said. Any more than 4 words is when things start to become
difficult. My brain cannot always decipher all the information whether verbally spoken
or indeed written.
So when we say memory loss, it's not so much lost, because it was never really there to begin with.
On the other hand there are things that I often forget.
I only know this now as I head towards my 42nd year on this planet.
I forget things every waking moment. I now have my bit of paper that proves I have Attention Deficit
Disorder, which is another part in a jigsaw. The jigsaw being me and my daily life
with a few bits missing, but not really missing, because they weren't there to begin with.
After all, how can you possibly lose something that you never had to lose?

August 2001

Such a lot has happened in recent months, some good and some not so good, but at least I am still alive to tell my story! On that note, I am now seriously giving a lot of thought to writing my autobiography, particularly as there is very little literature on the subject of Klinefelter Syndrome. Most of the literature available was written 50 plus years ago and only from those in the field of medicine/science. So I feel that the time is right for me to tell my story in the hope that it will inspire me to fight on for justice, and also that my experiences in a medical maze of "Don't Knows" will be experiences that no one should ever have to experience ever again.

The medical profession have much to gain by listening to their patients. It has taken me nearly 20 years to get my doctor's talking to one another, for me that is a huge achievement, but something they should be doing as standard practice.

I was once again refused Disability Living Allowance and also, one year on, I am still waiting for a Home-Care assessment!Br> However my battles with the "powers that be" continue and will continue until they sit up and take notice.

Staying with medicine and Klinfelters, my health has not been good lately and it worries me when I have started thinking about death at such a young age especially as I don't seem to have done a great deal with it, although that's nonsense as I have done a lot with my life and to be honest I am quite chuffed with the skills I have gained over the years.
It is frustrating though not to be out there among a workforce, instead I spend most days at home working on (what seems) my one man campaign to advise major clongomerates that they are not delivering the services that we are paying for. However as the British public expect bad service, that is what service providers deliver.
Being one of the few exceptions to the rule, I let them away with nothing. It often pays off and I need that kind of stimulation to keep my brain active. It is also useful for service providers to provide a better service. A bit like computer hackers really!
It appears that my Glaucoma maybe being exescerbated by Testosterone replacement. Did a doctor discover this? ....................Don't be silly!, it was me! That is why they are now talking to each other after I discovered the symptoms described in a Reuters Health Bulletin in June 2001.

Well blow me down! I actually have a letter from my endocrinologist stating that he "isn't familiar with current research,
but he will be looking into it further".