What’s there to talk about?

I just been by Dan’s blog, if you don’t know Dan Sheridan is a newly diagnosed guy with Klinefelter’s syndrome, and he wants to start an awareness campaign, such an innocent, he has no idea what he’s letting himself in for! Oh well mustn’t be too critical, don’t want to put him off.

Dr Riseley, Kopata Medical Centre, Lower Hutt. He was my mother’s doctor, he was the only doctor I’d heard about since we got back from England after a roughly 4 year break from ‘Godzone.’ Didn’t know anybody really, all my friends had disappeared, all the 1 of them. THEM, one of! That’s a joke. My other 1 friend was in London, and there was no such thing as e-mail, everything was “Surface Mail” a fancy phrase for ‘shipping & bicycle’, or “Air Mail”, and I hate writing. Can’t says I like typing any much better.

‘So what’s there to talk about’ I think to myself after Dr Riseley tells me “I’m always available if you’ve ever got anything to talk about,” but I never have. Nope can’t think of a thing to talk about, I just want to die, thanks!

Yeah I reckon looking back I spent about 4 years trying my damndness (that’s not a word) to knock myself off, almost got there too. Yeup I managed to write off 2 police cars, 4 of my own cars, a couple of power poles, a phone box, but didn’t quite get there. Such a disaster. Just add them on to all the rest of my life’s disasters. I gave up making a list after a while, it didn’t quite seem right.

Can’t figure out why more guys just don’t pop themselves off to oblivion when they get diagnosed with Klinefelter’s syndrome? It just seems like a natural progression to me, well it did back then. It’s not like life was anything terribly much to rave on about anyway. Years and years and years of scholastic failure. Always trying new things but never quite getting anywhere tangible with them. There was always something getting in the way, like other bloody people! Or I’d show promise, and get promoted beyond what I knew, and fail dismally as there was that one thing I didn’t know, and didn’t know how to ask, “how do I it!”

I reckon that’s time for an expletive!

Dan wants to see a Genetic Counsellor I think? There were them when I was diagnosed, my parents had the appointment, I was not invited. Why take a ‘mental retard’ to a Counsellor? I think that was the understanding of the day? The parents need to be reassured they did nothing wrong, they could have fooled around on some other night/day/whenever, like they managed to choose perfect times for my brother and sister, why not for me too!

I did get to see a psychiatrist, my whole family did too. You can read the letters on my website. Such fascinating and revealing letters, how my parents just did not know how to show appropriate emotion, but then, men aren’t really allowed to, are they! And of course I was never all that much interested in being round them anyway, well not my mother, not the woman who beat the crap out of me whenever she felt the need. That style of ‘parenting’ didn’t really leave a positive idea of her in my mind. So what’s there to talk about?

I did make the mistake one time of mentioning a few things to an Aunty of my ‘situation’ but I should not have opened my mouth. I could have saved myself a black eye! Oh well, never mind. There isn’t really all that much to talk about. I remember one time I was younger, I got a new bike, it was red, I was so short I had to get a leg up to sit on it. Then I had to figure out how to make it go. Hell it can’t be that difficult, even people I despise do it, ride a bike. Yes I rode straight into the back of the garage, ahh pedaling backwards makes it stop, remember that! There’s a front break, but it’s all but useless except for doing wheel stands, which were always technically challenging. Remember do not do front wheel stands whilst moving rapidly down hill! That causes mouth bleeding and front teeth through top lip disease!

Nothing much to talk about, not really.

OII Struggles with Genetics

I know about Klinefelter’s syndrome, I ought to I’m treated to alleviate the cause of it, my genetics.

I’ve also been reading about Klinefelter’s syndrome since 1976. Most internet sites, indeed most XXY men would probably say “Klinefelter’s syndrome is a Genetic abnormality/aneuploidy/anomaly/condition/disease/disorder.” I however take different view. To me Klinefelter’s syndrome is the symptoms of disease, and the disease is Seminiferous Tubule Dysgenesis, the symptoms of disease everybody now calls “Klinefelter’s syndrome” although it wasn’t always known by that name, the original name is Seminiferous Tubule Dysgenesis – feel like you’re on a round-about? Seminiferous Tubule Dysgenesis and Klinefelter’s syndrome are synonymous.

However, MY genetics are not the only genetics that can cause this syndrome. More karyotypes than the XXY karyotype in the phenotypic male CAN cause the symptoms of disease known by me as Seminiferous Tubule Dysgenesis, and by most other people as Klinefelter’s syndrome. Since a great many different karyotypes can lead to those same symptoms of disease in a phenotypic male, we can’t say XXY is synonymous with Klinefelter’s syndrome. What is also little known is we don’t know how many XXY phenotypic males have no symptoms of disease at all, they do not have Klinefelter’s syndrome.

OII does not represent those people, as some of those people are phenotypic females who are fertile and will only come to the attention of the medical profession by accident. The rest are phenotypic males, the difference being the expression of the SRY gene, normally found on the Y chromosome.

If the SRY gene is active, it is said to be positive and represented with the + symbol, SRY+.
If the SRY gene is inactive, it is said to be negative and represented with the – symbol, SRY-.

All biological men are SRY+.
All persons with Klinefelter’s syndrome are SRY+.
ALL XXY SRY+ persons are male.

Persons who are SRY- do not have, and cannot have Klinefelter’s syndrome, as they are phenotypic females. I think maybe 3 XXY females are described in medical literature, because of their rarity, not because they have any relevant medical disease.

On Organisation Intersex International’s website we can read:

Some examples of wrong-headed diagnostic paradigms are:

  • All XX CAH individuals are female.
  • All XXY individuals are male.
  • All AIS individuals are female.
  • All 5-ARD individuals are male.
  • Continue reading

    Why we XXY’s with/without Klinefelter’s syndrome aren’t Intersex

  • Klinefelter’s syndrome is the symptoms of disease and according to Organisation Intersex International ‘Intersex is not about pathology or disease’ therefore Klinefelter’s syndrome can’t possibly be ‘intersex.’

    “INTERSEX is not a medical condition or a disorder or a disability or a pathology or a condition of any sort.”

  • Continue reading

    Is it Sex Discrimination?

    On YouTube it’s easy to find examination videos of male and female genitalia, but it’s impossible to find examination videos of XXY males and men with Klinefelter’s syndrome, or any of the myriad of other non conforming to standard, or typically formed genitalia.

    Go to YouTube yourself and search as I have done, and if only my videos weren’t routinely removed for anything someone can think of, you’d be able to see what XXY males and men with Klinefelter’s syndrome do indeed look like.

    Or maybe it’s a problem for those who say we’re ‘intersex’ and I dare you to find the XXY guy, just by looking.

    The Blind Leading the Blind

    Onnineko the anonymous self proclaimed “expert” on “the topic” reads:

    I read that article and said, “Yep that about sums it up.” You can find the article on http://www.pubmed.gov. Amazing that they have finally published what we have known for years, well those of us willing to recognize the problems caused by Testosterone. Its not a panacea, no, Testosterone for people with Klinefelter’s Syndrome is one foot in the grave, with the rest of you following in about 10-15 years (or less if you take alot of it).”

    into

    Quality of life is reduced in patients with Klinefelter syndrome on androgen replacement therapy.
    by: de Ronde W, de Haan A, Drent ML.
    Department of Endocrinology, Vrije Universiteit Medical Center, Amsterdam, The Netherlands.
    p.deronde@vumc.nl

    But in fact he is 100% wrong. The title is grossly misleading, that’s what I say, others would say “the title is misleading.” In reality the report shows that men treated for Klinefelter’s syndrome with androgen by intramuscular injection, who have a higher level of education, have the highest Quality of Life scores of the men with Klinefelter’s syndrome in the study.

      There is no mention at all of longevity of life.

    Onnineko didn’t read the full report, even though he implies he did. This very same report was used by OII Australia in it’s submission to the American Psychiatric Association DSM 5 and obviously OII Australia didn’t read it either, as one ‘insider’ says “they took it at face value.”

    I am pro male, pro testosterone, pro proper medical care for XXY men and boys, I make no secret of the fact. I am happy to engage anybody in sensible debate over any issue to do with XXY/Klinefelter’s syndrome, but what debate can be entered into when opponents grossly misrepresent, either by design or by accident, anything that might affect that care?

    The biggest problem I see with this report is the means by which it was done, by self reporting questionnaire. The report freely acknowledges men with Klinefelter’s syndrome are likely to have, regardless of androgen therapy:

      “….it has been shown in previous studies that KS is associated with more difficulties in identifying and verbalizing emotions…”

      “Moreover, patients with KS appeared to be more easily emotionally aroused.”

      “The same investigators reported a higher prevalence of psychiatric disorders in KS patients compared with the general population”

    Self reporting questionnaire is the wrong way to go about soliciting responses from XXY and variant men, they are very likely to skew any results of a self reporting questionnaire by their own limited understanding. Imagine if Onnineko were a participant, since he displays a willingness to accept non existent information as fact, and report a misleading account to who knows how many blind followers?

    And of course I don’t leave it up to the reader to go and discover the report, I link directly to it, that you the reader can examine it for yourselves.

    In my opinion, the study should include only hypogonadal men treated and not treated with androgen for a more balanced result.

    Always, before you make any decisions regarding your health care, seek PROFESSIONAL MEDICAL ADVICE.

    War of the XXY’s Worlds

    War of the XXY’s Worlds

    I’ve just been reading Onnineko the self proclaimed “expert” on Klinefelter’s syndrome. Of course I am more than a little bit wary of self proclaimed experts, especially when they want to tell me anything about the disease I’m treated for. I like my experts to be accessible, by phone or e-mail, or both, and I like to be able to visit that expert from time to time. Self proclaimed experts who hide behind a pseudonym, post publicly, but do all their ‘research’ in some far off secret place, do not impress me. With that suspicion in mind I’ll attempt to delve into the latest offering of pseudo-science by this self proclaimed “expert.”

    I know Onnineko posts on XXYTALK, which strangely has a subtitle name of “XXY University.” This is an “open” University, no qualifications or money required to attend, and a “closed” University, none of the posts are public, oh except from time to time the owners let a comment they believe worthy of public viewing is allowed to be released. And it must be stated, even though I walked out on XXYTALK years ago they did have to sneakily trick me into going back to get my “marching orders” by sending me a “private message” that I have never actually read! I think I’m banned for something like 100 years for daring to criticise the owners?

    Everybody ought to know XXY guys have tiny testicles, (unless they’ve been surgically altered), and living up to their physical state, they literally do not have the balls to confront me directly and say “We banned you for………” It may well be that they banned me for signing on under a pseudonym? I forgot my original username, and was told of a conversation they were having that included me, I am often a topic of conversation, it’s just a burden when you’re really famous. Anyway, I signed on under a pseudonym to be able to read this conversation I was a party to, not by choice. And true to type, I just can’t read and not comment, I had to say “thank you” who wouldn’t? Someone was actually praising me, I provide information, that’s what I do, and I really don’t give a fuck what they do with it, so long as I’m not hindered in delivering it!

    Being that I am pretty open about everything, pointing out all the bad things, (as there are no good things), on having Klinefelter’s syndrome, I settled down to promoting my state of being as paramount see for comparison, not the bloody symptoms of disease that fucked up our lives! I’m not a K’ser for instance, I’m an XXY!

    So even though Onnineko is allowed to post under a pseudonym, I am not. I understand Gavan Coleman is not allowed to post under a pseudonym either? Well that then doesn’t make much sense, why have a double standard? No, I think the true reason for banning me was a comment I made in text on YouTube that the owners behaved like children, and to prove how right I am, they banned me because of that comment. Or it might have been because one of the “Moderators” or “Admins” got his gynaecomastia in a tangle (titties in a tangle) over some private matter? Who really knows, when men with socialising problems get all bitter an twisted (link to come), can they really be impartial or make sound choices when they’re in a position of authority?

    By being open and forthright I am not endearing myself to the current batch of ‘owners’ of XXYTALK. But then why should I care, do they really think they’re that important to me? It will always be the next generation that will be more important than the current. That’s getting a wee bit off topic…..oh hang on it’s MY blog, I’m allowed to be OFF TOPIC! There’s not going to be some ‘Little Hitler’ come along and move my comment to some far away place where nobody will see it. I have to free myself from the bindings of XXY oppression, oh well that won’t be hard, just walk away. It’s not like they have the level of testosterone required to put up much of a fight.

    So there’s the background, close enough anyway. The current issue for Onnineko is his assertion that “Testosterone Causes Permanent Damage vs Estradiol.” Does it, really, wow! I’m just so blown away, so where’s the science as NtB would say? Let’s have a good read,

    “Testosterone causes irreversible changes in human physiology regardless of the age of the person it is administered to.”

    For a self proclaimed expert this is really quite strange when we look at his justification:

    “One only need look at the results of a female to male transsexual transition to see the clear changes caused by Testosterone.”

    And here was me thinking I was going to read some new research that I’d missed, how boring, it’s the self proclaimed experts’ opinion on 46XX people who transitioned to male. Not even a logical argument, it might not even qualify as ‘pseudo science!’ How about ‘drivel’ as a more appropriate descriptive? Not even the slightest mention that many XXY guys are resistant to testosterone and that they do not respond as XY men do. Cut off the testosterone supply for an XXY man and his finger nails stop growing so fast, as does his hair pubic and body, and his beard slows to a snails pace of growth until it stops all together. Transsexual people on the other hand have to endure expensive, lengthy, and at times painful procedures to achieve what we can achieve for nothing!

    And I was looking for Chloe Prince’s video about her hair removal problems. If you’re not aware Chloe Prince claims to have been diagnosed in his 30’s with ‘late onset Klinefelter’s syndrome’
    giving him the vehicle to transition. In Chloe’s video she complains about the continuation of facial hair growth after castration. This argument might seem to back up Onnineko’s argument, but XY males as I believe Chloe is, have years of more facial hair growth than XXY men, and still produce androgen from their adrenal glands after castration. Genetic women who transition to male never had any exposure to the level of an XY man before and the cells of their body will respond more quickly, and much more quickly than in XXY males. If testosterone caused permanent changes in all who take it, how come it doesn’t have permanent effects in us?

    The example fails Onnineko, try again!