Parents of XXY’s

Do I talk about parents of XXY’s, no not normally.  They have their own ideas, they are interested primarily in their own child, and what they seem to forget is the same, they are only temporary caregivers.  The XXY himself will take over from them pretty damn quickly,  in just 18 years.

What can we say about most XXY’s?  Nothing, most XXY’s are never diagnosed.  What can we say about XXY’s who have been diagnosed,  lots and lots and lots.  Are they representative of all XXY’s, who knows?

Of the XXY’s who have been diagnosed, parents, we can say your son probably will have educational difficulty to some degree.  Do you want to read it? Do I give a shit?   What about XXYY’s and XXXY’s and XXXXY’s etc….?   Yes they are going to be much more severely affected.   Is your XXY son going to be like them, probably not, most unlikely in fact.

Are all XXY’s male, no they’re not, but I’m not interested in XXY females so if you want to read about them, go somewhere else.   I don’t even know where you can go, that’s how interested I am.  Do a PubMed search or something, do your own studies.

Klinefelters’ syndrome…. no I just can’t talk about XXY without mentioning Klinefelters’ syndrome.  Nobody has ever been born with Klinefelters’ syndrome.  Klinefelters’ syndrome develops sometime after the onset of puberty in every single XXY I’ve read about, and met in person EXCEPT 1.  The medical profession won’t say an XXY with normally sized and functioning testes  (balls)  is just XXY, they will say he has Klinefelters’ syndrome, even though it is a physical impossibility.   Klinefelters’ syndrome is a form of male hypogonadism  that manifests (love that word ‘manifests’) in adolescence, and it is the symptoms of the disease Seminiferous Tubule Dysgenesis.  So parents, your XXY son is probably going to develop Klinefelters’ syndrome eventually, it’s just not guaranteed, and it is a disease.

The one instance I know about, where the XXY man had normally sized and functioning testes,  I read in a reference in a report by Dr Shirley Ratcliffe, and he was detected because of investigations for something else. He lived in Israel and he’s probably dead by now.  But as it happened once, who’s to say it won’t happen again?

Oh that disease thing seems to be a big problem for some parents, some XXY adults too. They just can’t abide the idea that some people are indeed born with diseases.  For some reason they have to believe they or their son is  not sick.  Not all sicknesses are medical in nature, some are genetic, XXY is a genetic disease.    Some diseases are psychiatric in nature, AD/HD is a psychiatric disease and is also endemic in the XXY population.

Real MAN Crap

For some reason with some XXY guys they have this weird Real MAN Crap to promote, such as they were supposedly told they can only be a real man if they took testosterone therapy? I believe that like I believe in the Tooth Fairy!

I’m a real skeptic. I need EVIDENCE of claims made, and I’m quite happy to provide evidence of claims I make. My Endocrinologist was most helpful in providing information, just not the right level of testosterone, I was treated to XY average, not enough.

I had lots of questions, more than that I did homework too. I volunteered I’d given myself a sperm test and found azoospermia. I didn’t know what I found was called ‘azoospermia’ but my description of what I did was acceptable to John as a reliable method, and he wrote of what I’d discovered in medical lingo.

22 August 1977 azoospermia

I have never met another XXY man diagnosed with Klinefelter’s syndrome who’s done his own homework. It seems like I’m the only person who was interested enough in the words “Klinefelter’s syndrome” and the genetic signature “XXY” to find out what it all meant before I saw my Endocrinologist? I knew it had something to do with sex, when you get your balls crushed by, well by that stage, at least 4 doctors, you KNOW the balls are the problem.

I am alone. I am unique. I don’t need to be bolstered up by anybody else, as my dad said “Graeme has always been a loner.” Wasn’t that so nice of him to notice. I thought he didn’t give a shit about me. It’s amazing how wrong I can be!

1977 - psych report loner

My partner says I should visit her place more, now why do I want to do that? I know I have what she wants and she’ll be by, sooner or later, for her ‘man fix!’ We had a great laugh this afternoon, after preliminaries, about all the nonsense on the internet, and in books, about me and our other friend, Tiny! Of course you know why he’s called ‘Tiny’ as he’s the tallest guy I’ve ever seen in my life, much taller than any XXY guy I’ve ever met. Tiny is XYY! All I have to do is make myself known and all these other types just gravitate towards me. I have learned, being sociable aint all it’s cracked up to be, I like being a loner.

That wasn’t true in 1977 though.

Klinefelter’s syndrome 1976 to 1977 Deadly Serious from Graeme-xxy on Vimeo.

Traditionally Considered to be Male

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I thought this was interesting:

Masculinity

I always thought the word ‘masculinity’ pertained to adult males. I am also a parent, and my son has severe delays, and when I was told of the name of it the first thing I did was look it up, so why would a parent of an XXY boy not look up XXY?

This idea presented by Shirley Ratcliffe is pretty close to my idea as to why some XXY men want to erroneously claim they’re aladin sane2 androgynous, (Chris Somers) Androgynous hermaphrodite, (Chris Somers, Gavan Coleman)Hermaphrodite intersex, (Chris Somers, David Strachan, Gavan Coleman, Michael Noble)female even female! (Gavan Coleman)

They all report having this odd idea of their sex after they discovered they were infertile. Being XXY was not a problem at all. Being diagnosed with Klinefelter’s syndrome wasn’t an issue. Having Gynaecomastia was a challenge, since 2 of them had it removed BEFORE they were diagnosed XXY.

Gynaecomastia

Chris Somers tries to talk his way around that by claiming he was pressurised by the ‘society’ of his all boys’ school that he attended at the time, to conform his body to masculine normal.

I expect Gavan Coleman will do the same in time, it is his ‘modus operadi’ to blame others for his decisions. It’ll mean nothing to him to say ‘I really liked my tits and I really wanted to keep them, but in order to conform to masculine normal I capitulated to teasing.’

I don’t believe David Strachan ever had Gynaecomastia as mentioning it seems to have been an after thought, so he can more readily ‘fit in’ with the real Intersex people, and because in teenagers and men with Klinefelter’s syndrome it’s associated with a lack of testosterone. It CAN be a side effect of taking testosterone initially, but minor tweaking of the dose will cause it to subside. All these intersex types believe breasts are sex organs, and not disease in a males at all. There’s no way it could kill these guys! 🙂

“After 20 years of hormones, my body is
almost supermasculine (except for my
breasts). I feel like hormones have poisoned my body

Cameron 1995”
ISNA Newsletter

Of course all that poison didn’t stop him from taking it. In theory he started taking testosterone in 1975, just a wee while before me, and I don’t feel poisoned at all. So someone KNEW David Cameron (surprisingly similar name) was lying in 2002 when he claimed XXY boys were being experimented on, with the ‘poison’ testosterone, in the Fall 2002 ISNA Newsletter!

It’s a terrible thing when the charities one writes to makes their publications public knowledge, for the rest of time, that all can read. If this Cameron fellow was obese he could have developed ‘man boobs’ like any other obese man can develop. XXY men develop breast cancer much more frequently than XY men. It’s amazing this Cameron fellow was still alive after 20 years of Gynaecomastia! And the poor man just like David Iris Cameron Strachan was dissatisfied with the KS&A, as he perceived them to be a parent group, who didn’t represent homosexual men. This Cameron fellow of 1995 looks like the identical twin of David Strachan, associated with AIC today.

According to the poor Cameron fellow his doctors told him nothing about Klinefelter’s syndrome, and all the ‘men’ with it were homosexual and/or Transsexual. It must be an American thing, I have met in New Zealand 3 homosexual guys who are treated for Klinefelter’s syndrome. The 12 others never volunteered their sexuality. So what 20% were homosexual, what’s the usual rate? 🙂

Depending on the report Gynaecomastia does have a wide variability of effect, both in frequency and duration, and karyotype, XY boys in puberty get it too, and overweight XY men.

But infertility is pretty much universal!

Their masculinity was majorly challenged by being infertile, as masculinity is closely related to virility and fertility. I was quite surprised to discover that. In fact it’s a state of being male at any age where virility and fertility are assumed. If you’ve male genitals and you can’t meet the expectations of society, ‘how can I possibly be a real man,’ I’m certain that was their thinking. As blaming others for their failures is a factor in their personalities, they’d naturally be drawn to a group of people who have genuine issues with the medical profession, not made up issues many XXY men invent.

Maybe that’s how I preserved my sense of masculinity, by my understanding of the word? So that leaves hope for these emasculated in their minds souls to regain their true selves, and be the real men they were designed to be. Then of course they’d have to compete in the real world with real men, and I suspect they may be a tad bit unprepared for the contest. Far better in their minds to completely capitulate, than even attempt to try, as that requires work.

All these men are intersex as they can’t understand genetics. In at least Michael Noble’s eyes I’m a genius, I can magically make the additional X disappear, it’s all my doing. I’m a very clever man in his eyes. I know the power of genes and chromosomes are just carriers of genes, and if the genes don’t function, or do function where they’re not meant to be, problems will occur.

I think they all believe they have two complete X chromosomes fully functioning in all their cells, they believe they’re female of one kind or other. Not a lot different from being Transsexual.

Of course if Michael’s forte wasn’t Creative Writing, and was Genetics, he’d know all females born with female genitals, only have 1 X fully functioning in all their cells, just like all males do, even all XXY males! It’s just so sad all these potentially clever men have dedicated their lives to their ignorant stupidity. Imagine they all could have been great writers, or explorers, or even musicians and teachers if they’d just set their minds on education, instead of self justification!

Oh well, never mind. At least they can’t breed and pass their lack of knowledge on to anybody.

tongue_in_cheek

Manipulating the Truth

As I have said many times, when I was a kid I believed I was the ugliest person in the world. There had to be some reason why when I was doing nothing other students would stab me with sewing needles in my hands, pins, drawing pins, anything sharp. My pastime was not being there, and their’s was making my life miserable.

Maybe they had noticed I’d drifted off to nowhere? Maybe sometimes when they did those things I didn’t respond at all? That makes sense, I suppose, if you’re cruel mean and nasty. Are children cruel mean and nasty, yes they bloodywell are!

I got into heaps of trouble for not following instructions. Halfway though it I’d just drift away, so I’d hear the first part, and the last part, but the middle part I didn’t hear. I wasn’t actually present, in my mind. What’s that saying “the lights are on but nobody’s home.” That was me, that still is me, from time to time.

Even the medication does stop it all, but it happens much less frequently with the medication. So I’ll put up with the nausea that is intermittent, and put up with the ignorant adults I meet from time to time who don’t have brains that just turn off without warning.

But it was more than that. I looked ugly. I have plenty of evidence to prove that. My parents agreed my image should be manipulated so that I looked right, acceptable, good enough to be called ‘their child.’

Neither my brother or my sister had manipulation to that degree of their image.

My parents had no desire to make me feel good about myself, they didn’t even try. What was the point, I’d already ruined my mothers life, just by being born it seemed.

She didn’t make any secret of it, she tried to give me away when I was 10, and tried to kill me when I was 8! I was late home from school, so she beat the crap out of me, not even appropriate for those days, or maybe it was?

Compared to today, growing up in 1960’s New Zealand was vicious! Well it was in Wainuiomata. I wasn’t the only kid beaten to a pulp. Remember Murray? I do.

graeme53

Those teeth are a sign of XXY. I don’t know if ALL XXY guys have giant teeth, but there is a condition called “Taurodontism” which involves a huge pulp cavity, thin enamel, and twisted roots. Not just XXY guys are affected by it, but if there’s a guy with them, who’s quite tall, skinny, no muscles, no body hair, yeah I’d suggest a compete physical examination, and karyotype.

My teeth were, well huge. They regularly went straight through my top and bottom lips. Every time I was punched in the mouth, they went straight through. Every time I fell over and landed on my face, they went straight through, I got tired of drinking my own blood, and they just seemed to attract attention.

So in most of my school photos I have my mouth closed, and I didn’t smile very much, I had to be tricked into it because I knew as soon as my teeth were seen, people’s whole attitude toward me changed.

graeme020

I need Therapy

Absolutely every part of my life a has been affected by that additional X, there it is down there
V
V

cropped-ktype.jpg

I don’t care which one it is, I don’t care which parent provided it. Pick one, either one, that’s the extra one.

That’s not the original one, it’s a copy of the original one. I asked Dr Delahunt first time I saw him how many cells were examined to arrive at my 47XXY karyotype. He looked taken a aback, not expecting that question. All I have to go by when it comes to doctors is my personal experience, and most of the time I was with my mother. It was always interesting looking at them talk to each other, looking what’s on the desk, what’s around the room. Examining details of the environment. Not really paying any attention to their words.

Now I have to take notice of words, I’m not prepared for this. I like documents, books, pages, newspapers, anything written down will do, better than spoken words. Speaking words is just complicated. So much information can be imparted by a glance, why bother with words! Words a necessary when meeting new people, especially doctors. I had to concentrate.

The answer was 300.

According to all the books I’d read there was no cure. I was going to turn into one of those ugly shaped bodies I saw at Lower Hutt Public Library. I was going to look like a fat woman with male genitals. The prospect was not inviting. How anybody can like looking like that I do not know. Of course being a legal minor, just, my parents took me, under protest, to that first appointment.

Both of them there. They going to talk about my balls. I was petrified. I was going to have to take my clothes off in front of them. I had it all worked out, I knew what would happen. I gawd, where can I go? I was so nervous all the time, I shook like a leaf in a breeze, constantly. People call it ‘hand tremors.’ I had whole body tremors. I don’t know what they’re talking about, ‘hand tremors’ how lucky can they get? Only their hands are affected! I needed a hat.

I had no idea that was related to being XXY. I had no idea all my educational issues were related to being XXY. Really I had no idea about anything. I was bluffing my way through life. I learned how to take advantage of that bluff technique at General Motors, playing cards at lunch time. I’d only bet when I had a really good hand, for most of the game, then near the end when I had nothing I’d bet and everybody threw their cards in, I won with nothing! When you’re perceived as being a naive beginner, take advantage of it.

When the Harry Potter series of movies first came out I met a guy who looked just like the character Harry Potter. He wore exactly the same style of glasses. He had exactly the same bone structure of his face, he had exactly the same complexion. I advised him to take advantage of it, advertising agencies I was sure would be very willing to hire him. Ahh but he didn’t have the confidence. Confidence, the world runs on confidence. That’s how I learned to swim, I said I could when I knew I couldn’t. I bluffed my way into the main pool at Wainuiomata Public Swimming Pool, by lying. I was betting the instructor/pool attendant was not going to be willing to dive in fully clothed to drag me out unless I was drowning. That bet worked, and I taught myself to swim.

Now I had to teach myself Endocrinology. This was going to be a challenge. I’m still learning it too. I dove in at the deep end as usual, unprepared. I’d discovered the worst possible scenario and decided one way or another I’ll change that outcome. You don’t believe me? You’d better believe as I’m deadly serious. Klinefelter’s syndrome ought not exist on this planet. Klinefelter’s syndrome is a disease worth killing. That’s about 40 years ahead of my account, I’ll get there eventually.

I’m side tracking. I’m good at it, I’ve been good at it for years.

My parents decided they wanted to talk about how skinny I was. Well that’s not my balls, I can talk about that. This is when I found I could rely on Dr Delahunt to support me. He said, “Young men with Klinefelter’s syndrome are invariably skinny. They can’t gain weight as they can’t convert energy to muscle.” (I was just about to say that myself! It’s not my fault, stop blaming me.) They were happy with that reply then. The conversation went on about all sorts of other things, none of them were my balls, thank god! I didn’t believe in god then, but god can take the thanks for that. I don’t mind sharing glory.

Then Dr Delahunt said “Mr & Mrs Tucker can you leave the room now please, I want to talk to Graeme on his own?”

What he meant was he wanted to examine me. And they left. My worst case scenario did not work out this time. I didn’t bet on that happening. There is no way that idea was even considered. Every other medical appointment I had but 2 at that point, one of my parents was present, usually my mother.

I was still legally a minor. I didn’t have the right to make choices. All the arguments and protests before hand, and on the way there, come to nothing, my parents did care about my privacy.

By the way I call Dr Delahunt “John” these days. That’s his first name.

We chatted for a bit about what I’d done with my life to date. I was pretty depressing, I considered I’d not done anything. I’d wasted my life. I’d circumnavigated the world twice, not under my own steam and not by my choice, but I still did it. I taught myself to read, write, swim, learn. I had to, no-one else could, and they did try. Of course I got some assistance, but I had to do the work. So I wasn’t really the failure I thought I was, the failure I said I was. I think if I had more testosterone I would have had a different answer.

I hated being skinny, I said that, I wanted to know what he could do about that. I wanted to know about those fat women shapes I saw in the Library, can he stop that, is that my destiny? He explained to the current thinking of what Klinefelter’s syndrome was, how it was caused and how to “manage” it. There was no cure he said, I beg to differ. I’ll get there later too.

Then he examined me. I’d love to report it was a breeze, it didn’t hurt at all, and he was such an accomplished Endocrinologist and not at all like all those klutz doctors, who just didn’t have a clue how to palpate testes. It wasn’t like that at all, it was bloody agonising. It was always agonising. I’ve never had a palpation examination that wasn’t agonising. I think I know why, my balls were so small the doctors were palpating the epididymus too.

epididymis

As John said recently, my testes were smaller than 1.0mL but the Orchidometer only goes down to 1.0mL so he could only record on my notes that they were 1.0mL. I had atrophied testes, they were much smaller than children’s size. They were useless. They were ‘diseased’ but they weren’t ‘diseased’ enough to remove. In England they were diseased enough, but not in New Zealand. I didn’t have a partner, in order to get my balls removed in New Zealand I need the consent of my partner. There are some silly rules in New Zealand about sex too!

So that was a bit of a sticking point for a few years.

There was a treatment but I had to ‘qualify’ for it. The qualification was that I had elevated LH and elevated FSH and elevated GnRH, they’re hormones in case you don’t know. Even though I had tiny balls they were still producing sufficient testosterone to not force my LH, FSH and GnRH skyward. I was tired, I had to have sleeps in the afternoon, I was skinny, I had no hair to speak of, no facial hair, failing sex life, and still I didn’t qualify. So I’m buggered if I know how anybody else can claim they were given massive doses of testosterone after just 1 visit with 1 doctor!

My experience is it doesn’t happen that way. There has to be testing done, examinations, time has to go by. John wasn’t treating me according to his plan, he was guided by the Endocrine Society. They determined the therapy. That was another sticking point for a few years.

Of course what’s a teenage boy most afraid of when visiting the doctor knowing balls are going to be examined? Got any clues? Having an erection! Honestly, I thought my genitals had changed colour because I masturbated, and I didn’t want him to know I masturbated. I believed as an erect penis was more obvious, then it was more easy to see if I’d been masturbating. As I said earlier there was no education about puberty and by the time I started studying Human Biology all the lessons were about aspects of sex beyond puberty. I never got the information that genitals changed colour at puberty. It sounds silly I know, but that’s what I thought.

But having an erection was not really a problem as I was nervous, shaking anyway, and my penis didn’t always work in those days. It was still in the back of mind though that one day my penis might work, in the last place I wanted it to. From John’s perspective he wanted to know my penis worked. We had a real communication problem in that area.

Conversations on Facebook

Michel’le O’Brien
Originally, OII was created because of perceived problems in ISNA, such as it being focused on North America, yet primarily Anglophone, with limited acknowledgement of Hispanic speakers, and no attempt to include Francophones, of whom there are large numbers in Canada as well as Eastern USA. The main opposition was to ISNA’s support of DSD, something I am sure you would support ISNA for (apart from being in a country outside their coverage). It was only when OII became militant in its opposition to the disorder in DSD, six years ago, and ISNA shut up shop, five years ago, that people who had been members of ISNA began to join OII – as it was the only international non-condition-specific organisation in the world. Far from dinosaurs, trail-blazers at that time! As for your suggestion that therapies be denied, that is crap – we support treatment with informed consent, and that the individual has the right to choose what form that treatment should take.

Thanks for your contribution Michelle, and my reply is:

The most fascinating thing of ISNA is the name of it’s newsletter, prior to 2002, “Hermaphrodites with Attitude.” Then Chase and Dreger got involved, two academics who may or may not have DSD’s, or Dreger doesn’t for sure, anyway they steered the ISNA away from Hermaphrodite states to Intersex states, then abandoned ‘intersex’ altogether and initiated it seems against the will of the membership “Disorders of Sex Development” aka DSD’s.

Also in 2002 Dreger wrote an article about why all manner of non ‘intersex’ conditions ought to be included as ‘intersex’ using a theory not of how different diseases come about, but how those with them are treated, inferring everybody with what we now call DSD’s are dissatisfied with our medical care, and from my experience, research, case reports I’ve read, and personal accounts by XXY’s or men with Klinefelter’s syndrome, we’re not.

The problem for us has ALWAYS been getting diagnosed early enough and getting adequate hormone therapy. These are the areas we’re discriminated against as even people with severe mental retardation are not castrated, but we are effectively by the refusal to treat! Quite the opposite to what the ISNA XXY and alike members were reporting.

And an extension was added:

I see I need to qualify that last statement. Men or adult XXY’s always got sufficient hormone therapy, well sufficient to XY average at least. But teenage boys who were found to be XXY and variants were often refused hormone therapy as they had not developed the syndrome, whereas the men were full blown and suffering.

Of course for the XXYY’s being 16 and impotent was no laughing matter, and XXXY’s the same. Their learning and behaviour difficulties were, and still are, being used to deny them hormone therapy. And the adults from ISNA were promoting ideas that they had never experienced as they were not diagnosed as teenagers. They appear to be under some weird impression that their experiences are uniform, which is so far from truth you’d need to be completely naive to believe them.

In reality Michelle, I did not complete male puberty until I was 38 years old for fucks sake! This almost seems typical for XXY males! I didn’t complain when I wasn’t developing as my unaffected peers, and I was delayed anyway, and so long as I could have an erection there didn’t seem any need to make any other changes. I had surgeries willingly to improve my standing in male society, which I do not, of course, regret.

And do not let yourself be led astray, what I had done was and is quite normal for young men with Klinefelter’s syndrome. What your people refer to as ‘normalising’ surgery in the negative, we regard as ‘normalising’ surgery in the positive. We are not the same, and your people who who choose not to be treated for their Klinefelter’s syndrome are making themselves sick. And of course as adults they can choose that course of action. But the changes caused by testosterone therapy are by no means permanent for XXY males, as soon as they stop therapy they regress to a prepubertal state. Information given you by your XXY male members is wrong.

And take out the word ‘intersex’ and we’re blood brothers and sisters Michelle. Yes we all have atypical sex development, I agree. Happy now? 🙂 It’s the real issues that affect each group that is important. We don’t share the same issues, not like the XXY or Klinefelter men who regard themselves as intersex declare. They’re making up stories to fit in, claiming all manner of similarities that aren’t there. By treating us our doctors are doing us a major favour, it’s getting the treatment at the right level that’s the hard part.

But your XXY guys, all diagnosed as adults, are presenting fairy tale events. Claiming they liked their tits, and they were just complying to society, when in fact getting mastectomy if the disease is not severe enough from a doctors viewpoint is almost impossible. Or they like the rounded body shape associated with hypogonadism, but take testosterone that guarantees they won’t have that body shape! Doing a Nicky K D Chaleunphone, arguing in effect both sides of the argument at the same time!

Adults are not forced to take testosterone therapy and my doctors were not prepared to forcibly treat me way back in the late 1970’s either, I had to choose hormone therapy. All the guys who protest about testosterone therapy and take it, saying they were told they couldn’t be “real men” without it, are telling porkies, to fit in!

How I was diagnosed with Klinefelter’s syndrome

So Onni Neko was diagnosed at age 35, I wonder how old he is now? I was 17 when diagnosed, I was at my 2nd job after I left school, and I was at my 1st job for 11 months before I left and went to that interview. That’s a weird interview, I had to take all my clothes off, and stand about naked with my arms stretched out, as if I were imitating a tree!

I had may balls squeezed, god that was uncomfortable. I had to see another doctor that same day, he rang me himself after I dropped a letter off at his surgery, written by the first doctor. He squeezed my balls too. You know, when you have your balls squeezed and you’re not expecting it, you remember it, well I do anyway!

The 2nd doctor said “We think you’ve got an extra chromosome, we think you’ve got Klinefelter’s syndrome.”

I’ve been studying XXY/Klinefelter’s syndrome since 1976 my year of diagnosis. That makes me an expert on my Klinefelter’s syndrome, of yours only you’re the expert!

I remember everything as if it were 37 years ago, which is was, as everything yesterday has not been saved to long term memory, and is not available for instant recall. I’ve been taking testosterone for 36 years.

I have a video about how I was diagnosed, it’s had over 18,000 hits in 2 years, it’s got lots of comments on it too.