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.

Nicky K D Chaleunphone is an IDIOT

Nicky K D Chaleunphone likes to make all manner of unfounded comments about me and what my sex is, then from time to time the little wanker manages to say something true, I am not intersex, like him I am male.

Nicky is male because he has male genitalia. I have seen pictures of his genitals, he kindly made them available, so I can say for certain he is a man. He’s not a very nice man, he’s not a very smart man, he’s not a very good looking man either, unless your eyes behold more than mine?

Nicky the Bigot

Now remember this blog is supposed to be about Kallmann syndrome, which Nicky K D Chaleunphone is supposed to have. Kallmann syndrome affects both males and females so one must ask how on earth can it be an intersex condition? Like CAH also affects both males and females, so how can that be intersex too?

Anyway, the intersex grouping of people, well it’s their business, if they want to include or exclude anybody, for any reason, it’s not really a concern of mine as I’m not intersex. The reason Nicky K D Chaleunphone hates all Transsexual people is because he is Asian. I was surprised to discover that Asian’s generally regard Transsexual people as not real men and not real women. Even though Nicky K D Chaleunphone wasn’t raised in Asia, only born in Asia, his parents were. They took with them to America their culture of hatred and raised him to hate. This is why Nicky never has a nice thing to say about anybody.

The Post That Didn’t Make It

Since some here want to accuse me of all manner of impropriety with children, specifically boys, I will now show everyone why that is so. This won’t be above your pay scale, this is really simple.
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This is one such message I received, and I think the ‘person’ who gave the me the ‘you’re banned’ message must have let it though so Amy here could leave his/her not quite intelligent comment, the caliber of which you can get used to if you regularly take part in “Debate This”

amy da bitch

So now you know why XXY boys rarely get diagnosed before adulthood, this is the type of fear non erotic sex information receives from ignorant people.
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Boys usually have testicles in their scrotum at birth. Testicles grow throughout childhood and at puberty they massively increase in size, as the diagram below shows.

Testicles grow in puberty as they produce more and more testosterone, which is caused by increasing levels of a hormone called Leutenising Hormone, which is made in the Pituitary gland in the brain.

Some boys’ testes don’t grow and puberty does not begin and they can have a disease called Kallmann syndrome. If your boy gets to 14 and has not started puberty, take him to a doctor and insist on LH and FSH hormone level checks. Girls can have Kallmann syndrome too. The most obvious sign for all people with the most common form of Kallmann syndrome is anosmia, no sense of smell.

Like most other boys XXY boys start puberty sometime about age 11. Their testes do grow in response to LH from their brain, however soon after puberty’s onset their testicles atrophy, they shrink, severely, back to childhood size or less. This is caused by a disease called seminiferous tubule dysgenesis.

Whether you think your sons and daughters are progressing through puberty properly or not, I think it is important to have all teenage boys and girls examined by a doctor to make certain everything is progressing as it should.

A teenage boy with atrophied testes will not notice, nor will anyone else, as this is about sex, and sex is frowned upon by society at large. In fact I read just recently how a 16 year old teenage boy died of testicular cancer because he was taught to be ashamed of his body, in my opinion.

Is there any mature person here who wishes to have an adult discussion about any of the topics I have raised?

orchidometer

A Message for Chloe Prince

See here:

FSH, LH, AMH, and inhibin B levels were normal in prepubertal patients and became abnormal from midpuberty.

That statistic refers to 100% of the patients in the report, of 98 individuals with Sex Chromosome Aneuploidy including at least 1 Y chromosome, aka males with Klinefelter’s syndrome, titled “Clinical Presentation of Klinefelter’s Syndrome: Differences According to Age.”

All the patients were sent to a pediatric or adult Endocrinologist because of various symptoms, including these:

Symptoms

The age distribution of all patients were:

Age

The karyotypes found in the 98 patients studied were:

Karyotype

All patients showed signs of Klinefelter’s syndrome from mid puberty and all patients were, and are, infertile.

Chloe Prince claims to have been diagnosed with Klinefelter’s syndrome as a result of Anaphylaxis a symptom not reported here. She also claim to be the genetic father of her two children.

I think Chloe Prince should make herself available for scientific evaluation, or at least her medical records available, so we all can gain a better understanding of how initial signs of Klinefelter’s syndrome can develop in an adult male, with gender dysphoria.

The Latest I can Find

For all those wallies out there, especially Australian and American wallies, who never look therefore never find, updated information, or statistical data about 47XXY/Klinefelter’s syndrome. So next time Hida Viloria wants to make an ass of herself, by repeating unverified crap from her uneducated colleagues, she can come here first and have a decent read of the latest I can find, that a lay person can easily read and understand, the exact reason why NZKA & NZSCS existed, Michael Noble:

Copyright © 2012 N´estor Pacenza et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Clinical Presentation of Klinefelter’s Syndrome: Differences According to Age

The aim of the study was to establish the characteristics of presentation of 94 patients with Kinelfelter’s syndrome (KS) referred to the endocrinologist at different ages. The diagnosis of KS was more frequent in the age group between 11 and 20 years (46.8%).

Most of the patients (83.7%) showed the classic 47,XXY karyotype and 7.1% showed a 47,XXY/46,XY mosaicism. Half of the patients younger than 18 years presented mild neurodevelopmental disorders. The most frequent clinical findings were cryptorchidism in prepubertal patients, and small testes, cryptorchidism, and gynecomastia in pubertal patients.

FSH, LH, AMH, and inhibin B levels were normal in prepubertal patients and became abnormal from midpuberty. Most adults were referred for small testes, infertility, and gynecomastia; 43.6% had sexual dysfunction. Testosterone levels were low in 45%.

Mean stature was above the 50th percentile, and 62.5% had BMI ≥ 25.0 kg/m2. In conclusion, the diagnosis of Klinefelter syndrome seems to be made earlier nowadays probably because pediatricians are more aware that boys and adolescents with neuro-developmental disorders and cryptorchidism are at increased risk.

The increasing use of prenatal diagnosis has also decreased the mean age at diagnosis and allowed to get insight into the evolution of previously undiagnosed cases, which probably represent the mildest forms. In adults average height and weight are slightly higher than those in the normal population. Bone mineral density is mildly affected, more at the spine than at the femoral neck level, in less than half of cases.

Just from a brief reading, skimming through it, I see that the patients with small penis overall was about 16%, contrasting favourably with the Ratcliffe report at 23%. The more patients found and studied the the lower the percentage of those with small penis are discovered. I expect even larger studies to report a similar trend.

It’s best guys that you don’t measure your penis size on the basis of published information. I notice one particular XXY idiot made a video about a site that said effectively we all had a small penis, Milton Diamond’s rubbish. Then reported a couple of years later that same information, as if it applied to him, and was relevant to all of us.

If you don’t understand anything, print this document out from the link provided in the copyright notice, take it your doctors and say these words “What does this mean?” I’ve used this process many times myself and it works a treat!

I can find plenty of information here to complain about, but don’t do that, sift out the good stuff. The first good stuff is, this report exists. Then there’s, you can copy it for free. Then you can repeat confidently – “Ongoing research continues into XXY / Klinefelter’s syndrome to improve our understanding.”

And all those above mentioned wallies can shut the f**k up!

Good day.

Not Uncommon

I just wrote a post to somewhere, to a group of people, but I think it’s worth posting here too:

cropped-ktype.jpg

I think what most people fail to consider in their determinations on how things happen and why is the most basic start point. We all need to remember we are dealing with a life long disease.

How did you feel when you first found out?

Can you remember?

I can remember being different, always, in everything. The diagnosis for me was just another nail in the coffin.

Do you recall going to doctors saying ‘there’s something wrong, there’s something wrong, there’s something wrong, and hearing back ‘it’s nothing you’re ok, it’s nothing you’re ok, it’s nothing you’re ok?’

Maybe you can recall instances of when you should have been diagnosed and weren’t? Maybe that happened many times?

Do you remember the frustration of being told nothing sensible?

Do you remember being treated like an imbecile? This information is far too devastating, serious, complicated, for a mere patient to understand! You must be kept in the dark, you might even imagine the disease is much more serious than it is, if you’re told anything.

What does all this cause, all this stuff that goes on around your diagnosis?

What about when you remember those times, what emotions do you feel?

Have you known a close relative who has died, or a close friend? How did you feel when you discovered your loss? What is that called?

That’s called ‘GRIEF’ isn’t it, I’m sure it is. The grief of the loss is very powerful, your mood might even change, you might very sad, cry, maybe even be inconsolable for a time. And as time passes that grief fades and life continues.

But when you’re diagnosed with a life long disease, your grief remains. You remember all those difficult times associated with your diagnosis, and you feel it again, and again, and again. Regardless of how much you know, and I know, the grief remains.

If only it can be forgotten about, just do whatever you need to do and never consider it. That would be easy if it were possible to never need therapy. But by the end of the regime you’re on, you remember it all over again. And your mood might change, it might be so regular that you don’t even know why anymore, this is life the way you know it. My life is the only one I’ve had, other people must be the same as me, they must be re-experiencing that initial diagnosis and the emotions surrounding it, over and over again.

I can be going about my work and thought just pops into my mind of a long lost relative, and I feel the grief of that loss, just for a moment, then it passes. But this disease is a constant, and I remember the emotions associated with it regularly, and I feel the grief again. My mood might change, just for a moment, maybe a bit longer, and life goes on.

When I don’t have my therapy properly I experience another grief. It’s called tiredness. Yeah I get very tired when I don’t maintain my dose. When I was taking Panteston Capsules I mapped my dosage very carefully for a month, taking careful notes of when I took my medication. Over a month I’d miss a third of all doses. I was tired a lot, and I was very moody, and irritable, and tired. And all the guys I hung around with at work, they had much more energy than me, and I couldn’t keep up. They’d encourage me to go to gym, and weight lift, but it’s just too hard to explain, constantly why I’m not that get up and go-ish.

All these things add to grief, that elusive emotion that sweeps in like a mist as if there was no cause, but there is, and I need to recognise it. I think you do too.

Graeme,
XXY4LIFE

Australia 1988

A year is a long time, it’s 52 weeks, remember. I must have seen John before 1989 as I went to Australia in 1988, to live, forever. Forever isn’t very long at all. The maximum length of script for Panteston I could get was 6 months, so that’s what I got. I also got a letter of introduction for specialist care.

After I got my Redundancy in 1987, hardly worth the effort I put in to that company, I made Head Boards for Waterbeds. I had my own division I built from me to a staff of 6 I think? I suppose my employer noticed I was the right stuff to train. They were good to me, they were excellent employers. I was just pissed off I lost my job for reasons beyond my control. They relocated to Auckland and my last task was to train my replacement. My employer had 2 factories and they were shutting down their Wellington branch, so they had all the people they needed.

‘sigh.’

1988 was Australia’s Bi-Centenary year, celebrated in September I think? I was on the Gold Coast by then in a bar with my uncles, that’s why I went to Brisbane I had family there. If I’d gone to Sydney I might have survived longer, but it was all going to fall apart anyway. I was ‘gun shy’ by then of all doctors.

I had my letter of introduction from John, I had my 6 month supply of Panteston, but there was an unforeseen problem. My Endocrinologists letter was worthless, fuckit! I saw a Brisbane doctor for a new script at about 7 months. I was never any good at taking them all, on time, so I had a few leftovers after 6 months. The doctor I saw was nice enough, he didn’t examine me, thank god! This was working out just as I had planned it would. Well it was until I tried to get my prescription filled at the chemist. The pharmacist said “What is your authorisation number?” Authorisation number! What authorisation number!!!!!!!!!!!!

I paid that bloody GP good money for that script, and he KNEW, he must have known, it was worthless! I had to see an Australian Endocrinologist to get officially recognised as being entitled to receive my medication. Bugger. I went back to that bloody doctor and explained my problem and he just said “This is not a big concern, I’ll refer you to a local Endocrinologist.”

Yeah right!

I almost got there too. I rallied myself up to get there on time, to the right ward, I almost entered but I knew what was going to happen, and I’d had enough. I can do this without medication. That was my brilliant decision. When you’re hypogonadal you should not make decisions, they’re bound to be bloody dumb!

Australians are great people, if you go there to retire, with your New Zealand Pension, or for a holiday, but to live there you have to have a type of personality that wasn’t my type. I was ok whilst I had enough testosterone, but when I was buying ‘black market’ old stock from creepy characters, in back alley’s of the seedy side of Brisbane, Australians get real racist! They hate New Zealanders who work there. It’s a tangible hatred, you can feel it! I noticed it before my testosterone ran out, but after my irritability level just sky-rocketed! I was lucky I didn’t get arrested and deported! It wasn’t like I was abiding by the laws after all. I was buying steroids illegally! Of course there’s a lot of crap in the media about steroids, and the Australian media, they invent stories.

I ended up selling almost everything I had accumulated. I like to live comfortably, even now. I like ‘mod cons.’ I moved down to Sydney, the people there are much more cosmopolitan, I discovered. Even by other Australians Brisbane is described as a ‘big country town’ jam packed full of narrow minded racists! If you want to find a bigoted society go no further than Brisbane, you’ll love it! Just don’t be black, Aborigine, Kiwi, British, Japanese, Pacific Islander (any island) that’s to live there, visiting’s just fine, they’re more than happy to smile at you whilst they take your money!

I got job at an upholstery factory with all sorts of other immigrants. The employers in Brisbane were good to me too, they paid good money for my services. It’s the everyday people who can’t control their over zealous pride, that would be the best, most favourable, description of them. But in Sydney I was just one of millions of different speaking people. The Australians in Sydney are pretty hard to find, in the areas I lived and worked. New Zealanders sound different to Australians, and they notice it, we do too. They sound ignorant and uneducated to us!

Leaving Brisbane not that great an idea, really. I had my unreliable supply, but in Sydney I had nothing. Initially I lived in ‘Kings Cross’ at the time it was Sydney’s ‘red light district’ it may well still be today? They had a mono-rail passed over the top of it, or quite near it. It was like you could shop for a prostitute (or whatever else you wanted) from the comfort of an air conditioned, glass lined, cabin. That was pretty modern! The ‘room’ I lived in was initially shared with 1 other person, then more and more beds just arrived and by the time I left, and moved to Redfern, I think, there were 8 people living in there, including an American Vietnam Veteran. He was a damn pain in the arse, all he ever did was get drunk, throw up, sleep and piss himself!

If I wanted a room on my own I had to provide ‘services’ to the Manager, and plenty of people did, there was just some ‘work’ I won’t do! This is when I knew I had to get testosterone therapy back. The Manager wouldn’t have found me very helpful, I was completely impotent by then.

It was all my effort just to stay awake for an 8 hour day, and I could never do overtime, and there was plenty on offer. I could have done the same in that factory as I did in Petone, if I had the strength? It didn’t bother me doing the mind numbing slog, to advance. It’s all good stuff for an employer, they can see I’m keen, and they want to pay me more. Then they want more, and I want more, and it’s a snowballing upward effect, usually.

Occasionally I do that and it comes to grief, I’m just being used and getting nothing tangible in return, but that’s life! Males are renowned for taking risks, why would I be any different?

I ended up calling my parents collect, to send me a ticket back to New Zealand.

That was; humiliating.