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.

Traditionally Considered to be Male

QR Code Web Address

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

Surgery – Prostheses

It’s amazing, some people criticise endlessly. Oh well ‘nothing ventured nothing gained‘ I read somewhere.

epididymis

That’s a nice diagram, at least it’s got a foreskin. That testicle is about right, I think? Not only my teeth are artificial. I don’t know what real balls look like on me, I don’t think I ever had fully mature testes. I don’t think most people know how big they’re supposed to be. If you listen to AC/DC or Jerry Lee Lewis you might get an idea?

If only it was that fast! It took years to get that result, and two main surgeries, one of which was a complete waste of time, effort, and pain! When you’re 12 and you have your balls fiddled with by a doctor you remember it, and when you’re 19 and have them surgically ‘fiddled’ with you not only remember it, you feel it. Having genital surgery is painful, really painful!

This is an extract from a report I publicise:

Testicular implantsThat extract is from Klinefelter’s syndrome: The Need for Early Identification and Treatment

If you want to get a copy of it, read below:

need for early 01

So there you have it, from even before 1991 XXY guys have been getting their lives in order with corrective surgery. I don’t know how SS got on in life after his initial therapy, I hope he did alright?

I also don’t know if his prosthetic testes were satisfactory?

I do know my first set weren’t. They were terrible.

asthenic_v1

When I talk about my diagnosis, I don’t make anything up, I’m not recounting an unusual event, the truth will do. I think that adds credibility to what I say. Others who have unusual accounts offer no evidence.

I have good scrotal and penile development but that doesn’t mean to say everybody who was a doctor I met thought so, nor does it mean those who also thought so agreed there was anything amiss.

The first Junior doctor I saw for my first set of prostheses said “There’s nothing wrong with him.” after examining me. His boss, the Surgeon, on the other hand said “Don’t be so bloody stupid!”

When I was 19 I looked 15, and the Junior doctor didn’t know how old I was, or he thought I was just at the start of puberty, I think? I still looked 15 in my 20’s. Looking too young was a major problem in my life. I quite like getting old, like my peers. It’s taken a long time to catch up.

That’s all about too little testosterone. So all the XXY guys who claim they were given very large doses of testosterone, and stayed looking much younger than what they were, yeah they’re going to have come up with documentation to prove it. Taking an XXY guy at his word, without independent corroboration, is fraught with difficulty.

I can’t seem to locate the letter by John discussing my first set of prostheses with my then G.P. Basically he was saying the results were ‘technically accurate’ but then he didn’t have to wear them! My natural testes were sewn up to the top of my scrotum, and the first set were left to occupy the rest of it. I presume they were anchored in some way?

However, having two pair of balls in a well developed but not exactly big scrotum was difficult. They would regularly ram my testes. I was kicking myself in the balls by doing every day normal things, like sitting down or standing up, or riding my bike, just like it was when I was a kid! Why is it that boys bikes have that badly placed bar right where their balls are when they dismount? What fool designed that!

I’m sure you can imagine the difficulty. SS on the other hand had both his testes removed, before his prostheses were inserted. In New Zealand that’s not how they do it. In New Zealand if you want ‘big balls’ because your natural testes have atrophied, you have to have two pair as the only way you’re going to get the testes removed is with your partner’s consent, and if you don’t have a partner, you’re screwed!

The below letter confirms I did really have 2 pair of balls, just in case you don’t believe me?

orchid

And this letter confirms the absolutely bizarre nature of my appearance.

bizarre1

Allergic to Aspirin

I used to get really powerful Migraine headaches. All I get now is the precursor to them. I’m sure I was under a helluvalot of stress as a child. I’m sure just being alive everyday was an effort. I never knew what was going to happen from one moment to the next, and making plans was more miss than hit.

Our family, our family.. family? Oh whatever, the people I lived with didn’t seem to give more than a second thought to the fact that from time to time I was totally imobilised in pain. I can even remember my brother and sister being so imobilised. They got sick from time to time too. I felt guilty when they were, as if I was the cause, like it was my fault! I just seemed to naturally accept responsibility for everything.

For some mindless reason our parents didn’t believe in pain relief, for children. They certainly did believe in pain relief for themselves. One time our mother spilled boiling fat on her hands, yes it felt like it was my fault as I witnessed it. Oh she was in terrible pain, it was horrific. My dad was just useless, he showed no sympathy whatsoever. It was like he said “What do you think you’re doing you silly woman?” Wow I thought, how heartless! I can recall ambulances going to the house but I can’t recall if it was for that incident of some other?

I know a Taxi stopped outside our house one time and a woman had a baby in it. That was pretty exciting. An Ambulance arrived for her, and her baby. I was having a real close look at those events until my dad dragged me away by my neck, around my collar! It was just getting to the good bit. It was so annoying, I almost had “practical sex education!”

For days later my mum’s hands were a wrapped up in, official from a doctor or nurse bandages, and they had to be changed regularly. And a nurse came, was it Mrs Murray or another nurse, I dunno, so there was pain relief involved. Really good pain relief. I could have done with some of that for my headaches. But even convincing people I had a headache was the hard part. Hands burned with boiling fat is easy to prove. Headaches not so easy, you can’t see a headache!

So I’d go for hours in agony. Literally agony. If you’ve ever had a Migraine Headache you’ll know what I’m talking about. They are absolutely diabolical! My eyes went all wonky. I couldn’t focus, I got split vision. I couldn’t watch TV, any kind of light made them worse. And they’d just arrive out of nowhere! One time I recall we were going to somewhere in Wellington, and my Grandmother was there, my dads mother. I was sitting on her lap on the front seat of the car, no seat belts. My mum had to sit in the back with the other 2 kids, I dunno why it was like that. Grandma was to be obeyed! Maybe that was the wrong impression, I could have had things confused?

And it was real fast Migraine, it was all over and done with in half an hour. At the end of a Migraine I threw up and passed out. So that’s what happened, I felt ill, my vision went, my head ached, pounding pain. Sitting in the front of the car with the sun beating down on me, and I just felt this sensation in my mouth and everything in my stomach came out, in a rush, right on Grandma’s feet. And I didn’t feel quite so well afterwards, when I woke up, and they were asking me “Why didn’t you say something?” I dunno I didn’t have a answer. I didn’t have time to say anything, it was just so quick, any other time I have a Migraine nobody takes any notice anyway, it wasn’t like it was a big fucken deal!

They’d offer me Aspirin that is the correct spelling by the way, Aspirin, weird word. It comes from the bark of a tree, so there, get used to it, so it’s NATURAL pain relief. It’s much better for you NATURAL pain relief, that it doesn’t fucken work is irrelevant! Well it doesn’t work for Migraine put it that way! Every fucken time I got a Migraine all they’d give me was Aspirin, and they’d wait so long to give it to me I’d just throw up, and pass out anyway. By the time I left home, their home that is, I had convinced myself I was allergic to Aspirin. It was that which was causing me to throw up. I had it all worked out.

My doctor said “Don’t be so stupid, If you were allergic to Aspirin with the amount you’ve had you’d be dead by now!” “The problem is you’re using the wrong type of pain relief, Aspirin is for mild pain, not Migraine.” I spent I dunno, days maybe throughout my childhood in agony for no reason, because I had the wrong type of pain relief, and there was a pain relief that was suitable for children.

Fucking stupid parents, MINE!

The Medical Professions are Lying to You

In my post titled “I need Therapy” I included a photograph of where the epididymis was. Then I noticed today that it does not have a complete penis with it. The penis is circumcised, and it’s a drawing! So I wondered what’s going on, that image was from a medical site, and American medical site. So I thought I’d check it out, how many medical sites show the penis in it’s natural state? This is what I found:

I’m not satisfied with standard anything

I don’t accept there us a such a thing as “standard treatment” for XXY males!

Notice a shift?

XXY boys before puberty do not have Klinefelter’s syndrome.

XXY teenagers might develop ASPECTS of Klinefelter’s syndrome, if they’re treated badly.

XXY adults who have developed Klinefelter’s syndrome ought to be allowed to sue their family GP for medical malpractice.

There is no justifiable reason that Klinefelter’s syndrome is allowed to develop in this modern age.

Klinefelter’s syndrome is the symptoms of a disease, it is not a disease in itself.

Triple X females, and people with Kallmann syndrome, prove that Klinefelter’s syndrome is not associated with educational difficulty, or delays to reach developmental milestones in early childhood.

All problems for XXY males are caused by the additional X genetic material, the parents of the affected individual, and quality of medical care afforded such males by their doctors.

It’s time for the real culprits to stand up and accept responsibility.

Actually; it’s long past that time.

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.