What does it feel like to have Klinefelters' syndrome?

No thanks, I don't like groups moderated by XXY's.  I like open free flow of information.

Such as I was chatting to a guy called Canice who mentioned he'd read an account of how testosterone was coverted to oestrogen in the tetses of XXY males at a different rate to XY males....and as it turned out this appears to be due to the inability of XXY's testes to make testosterone, it is a symptom of disease.

Most XXY groups I know of don't like the notion XXY's have a disease at all, and get very snarky when anybody mentions the word 'disease.'

Then there are all sorts of other topics that just don't affect me, but some think they need to be given importance beyond their value, to me.  

So it's best I not join, but they can come and read what I have to say anytime they like, as everything I say here is subject to normal values, that normal society accepts.

You have put that so well and its relaxing to hear another express themselves in a way that I should imagine describes many of us xxy’s, Through the years I to have had issues of lack of confidence in certain situations, low self esteem in myself, a feeling of not belonging amongst or fitting in with people of the male gender, depression and anxiety, lack of motivation, sex drive was lacking before T but taking T may have heightened my sex drive but it also heightened the feminine side of me so much so that I now suffer with gender dysphoria, I have spoken with many other xxy’s hove had similar problems and are no longer on T but instead chose to take Estragon as an alternative to HRT and my advice to anyone who recognizes more with there feminine not to take T because it will feather confuse and course even more depression and anxiety, Mind you I can say it has been an eye opener to the world around me in its many weird and twisted ways, I no longer take T and have no intentions of ever taking it again yet the path towards getting E is easier said than dun because one has to get a referral to charring cross GID clinic because no one ells it appears is allowed to proscribe alternative hormones to people like use. And like you I have not worked sins the later part of the 80s due to depression, anxiety and anger issues brought on by taking T, You shouldn’t allow the negativity of this country government make you feel more inapt life is what you make it I know that’s easier said than dun but you dote have to except there labeling of being inadequate to the rest of the human race, The more we talk about our issues and problems the more people will learn and lesson especially the medical association that treat use inadequately.     

Interesting concepts. I've met men on Facebook who totally reject all the published attributes of KS/XXY, that's because we're all different.

My reality is that every person on the planet who has more than 1 X chromosome, only has 1 X chromosome activated in each cell,  So we XXY's are no more feminine than any other male on the planet, or indeed any other female on the planet.  

There this thing called X Inactivation, it's what stops all persons with more than 1 X having an over expression of X genetic material.  If X Inactivation did not exist, the human species would not exist.

X Inactivation in females is random, that is the X from each parent is inactivated in a one on, one off regime.  My theory, and not only my therory, but fact, is that XXY males and females do not have random X inactivation, but X's from a single parent are inactivated in groups. This is where my expanded theory comes in, that the reason we're so widely different  is becuase those groups are not the same size or in the same places.  You can look up 'skewed X inactivation' for yourself, as it applies to XXY males.

I have had, and do have, psychiatric illnesses, and do something about them, so I don't suffer from them.  I'm not a martyre, I have no intention of living with diseases I can do something about.  I believe the medical profession is inherently good, and there to serve us. They just need a steer in the right direction from time to time.      

Other attributes I've seen others propose that they see as feminine are in fact gender stereotypes.  Females are allowed by society to be emotional, and males who are emotional are so becuase they did not learn a particular gender stereotype.  I had a psychiatrist once try to get me to take medication to suppress my legitimate emotions, that I give myself permission to have.  I think my daughter appreciates me expressing sadness when I'm sad, and happiness when I'm happy. That other males can't give themselves that permission too is their problem.  Not learning gender steretypes is not as bad some want me to believe. 

Interesting concepts. I've met men on Facebook who totally reject all the published attributes of KS/XXY, that's because we're all different.

My reality is that every person on the planet who has more than 1 X chromosome, only has 1 X chromosome activated in each cell,  So we XXY's are no more feminine than any other male on the planet, or indeed any other female on the planet.  

There this thing called X Inactivation, it's what stops all persons with more than 1 X having an over expression of X genetic material.  If X Inactivation did not exist, the mamilian species would not exist.

X Inactivation in females is random, that is the X from each parent is inactivated in a one on, one off regime.  The facts are that XXY males (proven) and females (assumed) do not have random X inactivation, but X's from a single parent are inactivated in groups. This is where my expanded theory comes in, that the reason we're so widely different  is becuase those groups are not the same size or in the same places.  You can look up 'skewed X inactivation in XXY males' for yourself. 

I have had, and do have, psychiatric illnesses, and do something about them, so I don't suffer from them.  I'm not a martyre, I have no intention of living with diseases I can do something about.  I believe the medical profession is inherently good, and there to serve us. They just need a steer in the right direction from time to time.      

Other attributes I've seen others propose that they see as feminine are in fact gender stereotypes.  Females are allowed by society to be emotional, and males who are emotional are so becuase they did not learn a particular gender stereotype.  I had a psychiatrist once try to get me to take medication to suppress my legitimate emotions, that I give myself permission to have.  I think my daughter appreciates me expressing sadness when I'm sad, and happiness when I'm happy. That other males can't give themselves that permission too is their problem.  Not learning gender stereotypes is not as bad some want me to believe. 

I take it you've never heard of xxyfriends on Facebook and yes there are those that reject some published attributes about XXY’s, Someone I used to chat with had very strong views about published attributes and as I’ve heard of late he had overdosed so much on Testosterone he had a heart attack he has sins mellowed out but you will always get those that reject certain published works take for instants a very religious xxy will always reject anything that go’s against the grain like for instants an xxy taking Estragon rather than Testosterone or an xxy choosing to change there gender to better suite how they feel rather than look at the bigger pitcher and try to understand or like some that will have there opinions over the colour you paint your house.                   

Oh right, so XXY's live in a bubble, they're in no way subject to environmental factors that affect everybody else in the world.  XXY's get fat because they're XXY not because they eat too much, and exercise too little?  XXY's can't possibly get heart disease simply because they're male, and males are more suceptible to heart disease than females. Men with KS and not treated die of heart disease, and diabetes, and pulmerary embolism, but this is because they're XXY not because they've refused for many years medical therapy. XXY has got a lot to be accountable for!

Or; everything I just typed is a load of crap, and people die as a result of aging, and many other factors that influence their lives.  If people want to have a happy short life they can choose it, and if people want a long miserable life they can choose that too!  I'll be much happier to have a long lived sex life, and a short chronological unhappy life any millennia!

Taking hormone therapy is not a sin, a crime, wrong, bad, or indifferent, it is necessary.  I see plenty of XXY's grizzling about how unhappy their lives are, but I see very few applauding those who've made a success of the difficult hand they've been dealt. They don't like to concentrate on the positives, but on the negatives. This is what makes them happy in a weird twisted kind of way.

People can actually choose to be happy, even when what others see isn't what they would praise, or accept.  As I said one time recently, "I don't suffer gender euphoria, I enjoy it."   The opposite of 'euphoria' is 'dysphoiria' of course, and those with gender disphoria often say this is a positive in their lives, this is a diagnosis they can get what they want with.  So really their 'dysphoria' is in fact 'euphoria' if they choose to see it that way.

I don't know why some XXY's don't want to do anything that makes threm happy.  When I first saw my Endocrinologist me being happy was his primary concern. If your doctors don't have your happiness as their primary concern, maybe you need a different doctor?  Or; maybe you need a different perspective?  

You obviously don't live in the UK  Graeme, where both myself and Bazza do, where it often amazes what we hear of other XXY experiences elsewhere in the world and wonder why is it so different in the UK ?

Why is it what treatment others report they get in their countries is so difficult for us to get in our country where it very much is many of us are also somehow made to feel we are wasting our doctor's precious time with what we often find they have no knowledge about.

Where here's a question for you; do you think there is any relationship  between how one feels and how they are treated ?

And another; do you agree healthy promotes happiness ?

My experience of ill people is that they can be happy for a while but happy can change to unhappiness without being made to feel better, that is treated for the illness.

Isolation brings its own rewards.  I was diagnsoed as a teenager, and had to wait until I was legally adult to even be offered testosterone therapy.  What if I spend my days concentrating on those few months of no therapy when I think I ought to have been treated?  At the time I was naive, all my trust was in my Endocrinologist, who always wanted the best for me, who was also trained under the British system, and operated under the same rules as British doctors.  

Later as rights for patients became more prominent and medical records became patients' property, here, doctors attitudes toward patients changed.  They had to be much more sensitive to patients needs, especially regarding what they put in medical reports.

I believe for many years I did not receive adequate therapy, as my body did not change, and hair growth did not increase.  No amount of exercise I did would create more muscle growth, and I was an avid cyclist yet had no stamina to actually finish a race!  In 1977 when I started hormone therapy, I also started an Apprenticeship, and passed my driving test, and bought my first car.   It was a Mini 850 by the way!

When I lived in London it was not possible to get a drivers license before age 18, but I was 17 when I finally passed, so I was learning to drive at age 16, when I was working at my first full time job.  Lots of other things were going on in life besides being diagnosed with Klinefelters' syndrome, and since there was NO information, literally none other than what was in libraries, which said I was mentally retarded, it became like lots of other mysteries of life, I just forgot about it.  There was no-one to talk to so there was nothing to talk about, it was a non event!

Then, post 1994, when I discovered tons of information by writing to the hospitals that were named on the few reports I did have, and they sent me even more information. Then there was also the beginnings of the internet, and even more information became available.

You, especially YOU, have to consider that I am a successful person.  I got married, that was a feat in itself. We had a family, two children, a major achievement.  The marriage collapsed, but never mind, these things happen even to the non affected!   I've run several businesses. As time has progressed I have added to my knowledge, being more than happy to change my understandings as more information comes to hand.  I will no longer take NO for an answer.  I have matured.  If my doctors will not respect me, they're replaceable.  If they won't do what I want, I'll find someone who will.

I know that even in Britain you people are entitled to a second opinion, so go and get one, if you can't get what you want from your current doctors.  If you do the study, have a good argument, who can reject your claim?  I argued with the evidence of my own body that I was not responding to the testosterone I was being prescribed.  It was my Endocrinologist who suggest I massively overdose, and I agreed with his suggestion.  Ultimately it is my choice what therapy I will or will not have.

So considering Barrys' rant, clearly I'm the subject of much debate amoung others regarding my health problems at present. That's all very good, if I die I die, end of story, like everybody else, nobody will live forever. But at least I'll die happy.  I'll still be having spontaneous erections, and dealing with 'morning wood', and having an active (and regular) sex life, having to shave every day over my entire face, whilst you fellas will be arguing over what sex you are and getting no-where.

Can you actuially change the way you think about yourselves? I couldn't without help, and I was lucky enough to meet a great Psychologist by the name of Verna C Raab.  She's a Canadian.  She may even be dead by now?    She taught me how to think positively, at about the same time I massively increased my testosterone, and a few years later, got other medication to keep my brain stable.  Verna didn't actually agree with drugs, but I don't have to accept every opinion of every doctor or Psychologist I meet. I can pick and choose.

So what I see with others is that they concentrate on bad things, or things they've been advised to do, and totally ignore all the good things, and things they've decided to do off their own bat.  So can you develop a positive mental attitude, yet do nothing to change the way your mind works?  Well I can't.  I need medications.

Maybe if you pay to see your doctors you'll get a response befitting what you want?  

       

  

Hello Jen,

I don't know.  I'm not a doctor.  That's where we need reaserch, determining what condition is associated with what disorders.  Such as we know hypogonadism is not associated with learning disorders, as people with hypogonadism who are not XXY don't have learning disorders as a ressult.  So we do know LD's are associated with the additional X genetic material.  XXX females can also have LD's.

I beleive I know of 1 XXY guy who has a narcissistic personality disorder, but that's just my uneducated opinion. And yes psychiatric illness is associted with males diagnosed with Klinefelters' syndrome, but whether that has to do with long term untreated hypogonadism or the presence of additional X genetic material, I do not know.

So really the best thing to do is get your husband to a doctor, and see what eventuates.

My experience is that an Endocrinologist will perform every test indicated as necessary, so if your husbands testes  (balls) are normally sized s/he won't order a chromosome test.  

.Jen be careful of trying to label others with psychiatric ailments you are not qualified to label others with for knowledge of such can be devastating to the recipient and indeed reinforcing of behaviour for the actions mentioned could be relief for mental pain or even a cry for help lack of understanding through accusation may make worse.

But your husband an educated man is unemployed, where perhaps you should know unemployment is very destructive for all concerned  and psychologists have it that unemployment is one of the causes of depression, where if untreated it can get worse and other conditions develop from the depression, even physical conditions, where if he is  XXY depression is common amongst us along with anxiety, low energy, negativity and oh yeah, unemployment.  I am myself in the same situation, that of long term unemployment, with no apparent ‘oompf’ to get moving despite wanting  to for I personally have had enough of this lifestyle, a lifestyle  not of my choosing.  But despite myself  being XXY, untreated I am, so perhaps I can sympathise with your husband’s situation… it’s a painful place where the  feeling is, you are not understood for there is stuff, feeling  many XXY’s report we can’t find the words to describe let alone communicate to those who could possibly help including our nearest and dearest for it can really be  we don’t even know what we are feeling, but it is distressing, very much so all the same.

And it is also distressing for our nearest and dearest, I know that as I was married once and divorced  before I was diagnosed of which I hold XXY responsible for undiagnosed meant no treatment and no understanding, not for me and not for her whom I loved, don’t let it get that far.

As to what to do that’s the difficult one, but if your husband is as you say on facebook all day, perhaps if you can find a way to steer him towards the many XXY support groups on there, many of which are secret or at least closed- meaning depending on the level of ‘security’ one’s actions within these groups does not show up on friend’s feeds, so your husband may be confident to ask questions or just observe to see if there is anything he recognises from other’s input, which might give him the confidence to at least talk to you about it, where if desired you can both decide on your next course of action.

And the movie XXY although informing  the world of XXY existence it is not very indicative of actual XXY, so don’t let the fantasies of the movie industry guide your thoughts

Oh yeah, go to XXY run support groups that are populated by people who can't relate to others, get upset over the most mundane things, are angry because they are depressed, yet blame their karyotype on everything that ever goes wrong in their lives.  You're bound to get sensible answers for sure!  

I blame my ex for our divorce.  We were supposed to be getting back together, but she determined she'd rather not, then suggested we ought not have just because that's what she wanted!  Women can be such difficult people!

However, I am liked by my daughters' friends, and her of course.

Relationships are much more complicated than merely the effects of intermittantly functioning genetic material.  You do know that you only have 1 X functioning in each cell, just liike everybody else with more than 1 X?    

 

Thanks, you're right not to label people. Let's just say he was an abuser who displayed behavioral symptoms of a personality disorder. Now that I know about this, the lying makes sense. Maybe it's biological?  However nothing excuses it. I was just wondering how many XXYers you know with high-conflict peraonalities. Does anyone know of any research linking the two. 

Yes, blaming one's behavior or lack of action on biology does seem like a lame excuse, but mere knowing helps people be more understanding. 

Why is it so though for XxY men to out them selves in relationships?  How does it feel?

You are speaking from your own point of view G, where I know you are not involved with the support groups on facebook, support groups where a great many XXY's and  mothers, mothers of XXY children receive a lot of help and understanding of which they don't get from the dry medical or the wholly negative online literature. They can be fraught places, but they can also be very supportive of those who are confused and in pain.

But given your apparent advanced knowledge of XXY I wonder why it is you are not involved with the support groups as for sure given what you know, how much help could you be to those who are lost, have you considered that ?

Your marriage failed for what blame of others where mine failed becasue what I now know of myself. I know my lack of interest in sexual relations was damaging, for I am aware such can come across as rejection, particularly to the insecure and then there was the communicational difficulties of which years later were described, even diagnosed as high functioning autism or perhaps just that 'autistic like' , that has been reported as something that sometimes comes with KS. Then there was my preocupation, I always have retreated into a world of my own when the emotions are running high, of which I now understand is a self defence mechanism, respite from a world I don't understand. I subjected my ex wife to all this and I have owned up to my own responsibilities and have since apologised to her for what I now know I did, for me to receive from her, her understanding and words to the effect that I could not help what I was for I was just as lost as she. But we did try to sort my issues out, we did quest of the family GP, low testosterone was discovered but the GP decided to do nothing about it. That's the crime in what happened, what the GP didn't do on what has now been diagnosed as Klinefelter Syndrome, where he had the data, he had ordered the tests, he knew I was infertile, but simply failed to connect the dots and make two people, a married couple happier in their lives.

My ex wife is now with another and with it happy, I can feel it in her voice beyond what she says and do you know what I am totally happy for her.

Jen

One area that is sadly lacking as regards XXY is the psycho social, where there are advocacy organisations, certainly the KSA-UK actively engaged in trying to raise awareness of the issue with the UK medical profession, where the KSA-UK have even commissioned their own research in conjunction with the University of the West of England resulting in a document of which provides a useful insight into the actual lives of UK XXY. An area often totally neglected given the focus on TRT where perhaps it is assumed TRT is a magic pill that cures all ills as in medicated and there forgotten, because there are no further problems, TRT cures all.

That document if wish to view it for your possible further understanding is available online for free and is entitled ;

  

 The psychological and social impact of Klinefelter’s Syndrome:Report for the Klinefelter’s Syndrome Association

Authors: Marianne Morris, Sue Jackson& Jude Hancock

University of the West of England

2009

And though I suspect this post may be moderated for telling you where you can find the document, I will chance it hoping the moderators here see I am trying to help others, and so, if you are interested in viewing the document it can be found at academia dot edu to at least view without becoming a member.

But why is it so tough for XXY men to out themselves in relationships ?

My belief based on my own feeling is because of society and it's education/ expectation, for there is stuff, with us or some of us that makes us question what we are, for what society has educated us to believe we should be, we suspect we are not and with it we, males conflate through misunderstanding such as sexuality, where male society is not that accepting of male variations yet for sexuality is conflated with sense of manliness. For example it is commonly held amongst males that if a male is in touch with their feminine side then the suspicion, even suggestion of which males feel is that they are in fact gay.

It's tough being male.

 

A lot of information to digest, I'll begin here:

"But given your apparent advanced knowledge of XXY I wonder why it is you are not involved with the support groups as for sure given what you know, how much help could you be to those who are lost, have you considered that ?"

I was added, without being asked, to an XXY Facebook group just recently, but I left after 1 day.  One of the unnamed owners decided to put my messages on 'approval' and I'm not prepared to have that kind of censorship.   Here I can steer foul of the rules and have my messgaes deleted, and like everybody else I have to wait to have my messages with links in approved or not.  But everyone is under the same rules.  I tend to find my posts attract different rules, unstated rules,  rules I cannot possibly work around, as the words 'disease' and 'disagree' are apparently banned there.  XXY guys can be extremely temperamental!  I find that especially true of XXY guys who refuse hormone, and other therapies.  So I don't want to put myself in their sights. I'm quite happy to share what I know publicly, where people can pick and choose as they please. 

I talk about XXY/KS everywhere.  I am regularly contacted by women claiming to be the mothers of XXY boys, and mothers of ADHD boys who were found to be XXY because of my posts. They describe their children and I say "That could be Klinefelters' syndrome?" or "That could be XXY?" depending on the conversation.  Obviously I can't say for certain if any of these people are who they claim to be, I just assume they are.  My current total of newly diagnosed since 1994 is 13. I bet my GP hasn't found as many!

And here.....

"But we did try to sort my issues out, we did quest of the family GP, low testosterone was discovered but the GP decided to do nothing about it. That's the crime in what happened, what the GP didn't do on what has now been diagnosed as Klinefelter Syndrome, where he had the data, he had ordered the tests, he knew I was infertile, but simply failed to connect the dots and make two people, a married couple happier in their lives."

How can any marriage survive under those circumstances?  This is outrageous, worthy of a complaint to medical boards of practice, or whatever they're called!

Without my mind altering medication, I can be duped to believe anything!  After I started taking it my ex could no longer claim we discussed a matter, she suddenly had to be truthful as I had developed a strong and reliable memory.  

She see thingts differently, but has made some pretty damning statements to friends of ours that cannot be ignored.  When the childen were born she had to deal with another party to the scheme of things, she had to change her way of bringing them up, and was not prepared to. That put a major strain on our relationship.

Parents need to be agreed on how the children will be raised.  I don't believe that beating children up is a viable form of parenting. I don't believe in hitting at all.  She is still single, and I will never get married again, although I have been asked twice now.  

My current partner thinks we make an excellent team, and I think that excellence wil be lost if the relationship is formalised.  She has her house with her family and I have my house with my family.  I do not have the stamina to live in a blended family.   Know your limitations I say. 

Thank you for reminding me to go online to support groups on Facebook. It would be so beneficial to speak with other wives however I have had to take my profile down due to the use of situationand behaviors of my spouse. It is too much of a temptation for me to be on Facebook. Being on Facebook doesn't set a good example for him, because I believe that he should be focusing on getting a job.Facebook is a distraction in that sense. It hogs several hours the  for him,and interferes with his sleep. But he does what he wants anyway, and I don't want to have anything to do with it. For a person who is self centered, Facebook with all its "likes ,"pokes",and the like is a source of narcissistic supply as well for him, and I reject that. So, I'm afraid these resources are currently unavailable to me

thanks ver very much for your honesty.  So, can I assume the fear of being perceived as "gay" to other males is based on an inner (hurt) feeling of inferiority and the stigmas/fears associated with that?  Is it a deep wound of shame people experience?  Would it be worse to have known as a young child or to have found out as a teen that one isn't the same as other males, and most likely can't reproduce naturally without IVF?

Support groups, it depends where you go, some are more open minded and more mature than others and there are even XXY adult groups only, that are places where XXY adults can talk frankly without being censored just in case they offend mothers and spouses. For that is a feature common to many groups,  XXY adults can scare the hell out of young mums with the reality of what we experience, where what we experience, it is evident the medical attitude posed towards XXY children and XXY adults is different. But of the groups, all of them, for us to fit into them and thrive we have to moderate ourselves just as we do in real life.

What will complaining do after the fact, after irrepairable damage is done - nothing and doctors seem to enjoy a certain immunity to what damage they cause to others in that they appear to be able to get away with not only their mistakes but also their poor attitudes. Oh sure complaint procedures exist but they are so convoluted and slow one may wonder is such by design to deter the complainant from pursuing their complaint.And what can be expected if a complaint is successful, the word sorry hardly has any meaning after what has occurred, in fact nothing does as the damage has been done, so again what's the point complaining, no point unless of course to alert controlling authorities a certain doctor is in need of re education to stop them hurting others, where will they re educate or will they just accept an error of judgement from one of their colleagues.

The Western world has moved on through concepts of gender equality where remember in that march men were perceived as the enemy, women experienced and perhaps still experience a renaissance of being where everything female was/is celebrated freeing women from the past. But what about males, what was applied to women was not applied to men, where women were allowed to express masculinity to be seen as an accepted part of a whole, but men, what did men experience, where the reality of the so called patriarchal society was that it only ever served a certain kind of male, where of course not all males are the same, for where masculine features in females, feminine also features in males, a feature many males who are aware have to keep hidden for fear of male and in some cases female society of which can be damagingly judgemental to naturally gentle and sensitive males who really had no say in what sex they were born and with that what is to be expected of them.

Women experience more freedom to be themselves in the Western world, where males, many males are still controlled by the past, but then what does society want, well for sure agression to enable commerce and of course war where the wet lettuce male is of  no use, but at the same time the wet lettuce male is discouraged from pursuing the gentle and caring through the societal assumption such males have ulterior motives of a criminal or perverted nature leading many males to feel out of sorts with what society believes they should be.

 

Must be incredibly frustrating!  Ouch!

There are ways to create secret profiles for the purpose of support group involvement, where one does not have to use their own name and currently it appears facebook admin don't seem to mind, where perhaps they agree with the need given just how many different health support groups there are on there as the only point of access to support many people can get.

But facebook involvement can be narcissistic, such has already been psychologically mooted, where the trick is of that introspection is to be aware of what one is doing and reign back where necessary. But many are addicted to facebook, many who would not consider themselves having a problem, even reject the insinuation if it was made, but what has happened to our society for us to feel the need to use such as facebook is a very good question. Where perhaps the departure from the traditional as say in working hours and gender roles is contributory. Is the societal narcissism displayed in facebook, a sign of our times and in a lot of ways societal insecurity and what perhaps is changing too fast, for remember what created the mechanisms of society took centuries to form where the digital revolution, it's not even decades.

And the job thing and focusing on such, well I will tell you, where depression features, though you may want to get a job, fear is a problem, for the longer one is out of work, the worse it gets and there is no help for such, I know becasue I am subject to it myself where I have quested of the job centre to be told though they recognise the damage long term unemployment can cause there is nothing they can offer to help one overcome one's problems and so they then direct you to the IAPT program who say they haven't got what the job centre is telling everyone they have.

The help isn't out there and the unemployed are subject daily to all the negativity being unemployed causes, where the unemployed have to deal with such words as 'workshy', 'scounger', 'feckless' and many more, where what do you think that may do to the depressed unemployed ? Two things I have observed; rebellion as in the break away from society and it's expectations and the depressed getting worse to the point they may retreat into their own worlds, shutting everything else out.

And the UK NHS psychological care aspect is one of  the most underfunded aspects of the NHS, where has been reported an explosion in people with psychological illness in the past five years alone of which the NHS are unable to respond.

And now we have medication resistant depression being reported.

Indeed it is Jen, for I am an XXY male that is very in touch with my feminine side, enough to be lumped with a diagnosis of gender dysphoria. Not that what I am was always visible, what always was I had to keep hidden through fear of society, until the diagnosis of XXY released me from much of my confusion for although XXYGuy is disparaging of the notion I am one of the XXY's that adhere to the concept that XXY is intersex, as it explains me. Where if such was not applicable what am I except a failed male, for what use is a male that is not male in terms of what society believes males should be and with it wear the sins that have been put upon male through the actions of the minority, that ulterior motive suspicion I mentioned.

Like I said it's tough being male or at least I think so given me.

Thanks for sharing that, 2xxy. See, the whole body thing shouldn't really matter. I learned to be attracted to him because the PERSONALITY trumped it. I'm a little masculine, so it balances, and his feminist didn't bother me  neither did his size, although it wasn't the prettiest thing to look at when it retracted in. 

Problem was his personality went from Jekyll to Hyde. 

Through having to deal with bullies and poor parenting, he turned into a very self absorbed sociopath, who compensates for his sense of inferiority. He pushed all that was good away probably because he didn't feel worthy, and there was nothing I coud say or do to change it. He reacts as injured to any perceived criticism. It's so sad. I wish I had known before I left him for having misrepresented himself and for being impossible to live with. He is an abuser, physically and emotionally. I'm so sad, and wish he could get better, but chances are not good, since he can't recognize fault or be empathetic to anyone's needs but his:-(. So many XXYers have similar problems in relationships? 

Feeling bad about ones masculinity must be hell, but with good supports it must be manageable, right?

Well I just happen to know we who have more than 1 X chromosome, regardless of sex, have only 1 X activated in each cell.  I can't ignore science, truth, and facts, I can't bury my head so deep in sand that my toes are getting sunburned! 

I don't even understand feminie or masculine 'sides'  what do you mean?  I see such comments as those like the 'only 10% of our brains are working' stated by those who believe in the para normal. I know for  a fact my brian functions at 100% capacity 100% of the time, that is what it is designed to do.  The only parts of me that didn't function correctly have been removed, they were teeth, gall bladder, testicles!  

I have as much idea of what it feels like to be masculine as I know what it feels like to be feminine, none!   I know what society expects of males and females, but whether I can be bothered with either expectation is umm... iffy! 

XXY said "There are ways to create secret profiles for the purpose of support group involvement, where one does not have to use their own name and currently it appears facebook admin don't seem to mind, where perhaps they agree with the need given just how many different health support groups there are on there as the only point of access to support many people can get."

I can't pretend my typing style, or make up another personality, both are despicable from my point of view anyway.

Not wanting to harp- on, but when I was diagnosed there was no infoprmation at all. The only genetic counseling was designed for parents!  The affected got absolutely nothing at all.  And considering most of the publicly available information said we were mentally retarded, and even convincing someone I had another chromosome was damn near impossible.  

The whole idea that the newly diagnosed today have no support, falls of deaf ears here!   I think online support groups are virtually worthless in the modern world, there is just so much more information available compared to late 70's New Zealand. You people have no idea just how lucky you really are.

I can understand the desire to meet in person other XXY's, even X0's and XYY's, I suppose parents can get some degree of support for their fleeting involvement as the temporary custodians that they are,  Hopefully such contact will benefit the children?  But a rotten parent will always be a rotten parent if they see better parenting, recognise it, and do nothing to change their rotten ways!   I am convinced XXY's do best when they have excellent parents, and do very badly with average and bad parents.

My parents knew they had a child with problems since I was 4.5 years of age, and that did not change their style of parenting one liuttle bit, so I consider even if they did know I was XXY, they'd have done nothing to change their style, which was disgraceful.

As for the psychiatric disease, Depression.   I'm sure there are people who are in work and suffering Depression.  I'm also sure there are the super rich who don't lift a finger to do a meaningful act of work in their entire lives, who are not Depressed.  I hardly ever work, but did today for a while.  As I'm providing the tools I'm not paying someone else to go and do a job I'm not getting paid for, so I do it.  I don't suffer from Depression.  Mind you I also don't refuse medications for my other disorders and diseases.  I'm not as physically active as I could be, but don't seek out more activity either.  I think if I were Depressed I'd seek out physical activity as a remedy first.  A swim, a walk, every day. A cycle ride, or running on the spot at a gym, all these things will aid recovery.

Now then, men who have insufficient testosterone, who are obese, who have Depression, may find it harder to motivate themselves to do physical activity?  But fio they can motivate themselves, just a walk around their block of flats, houses, or factories, may well cause them to think they want more out of life?  Nobody can shift them if they don't want to be shifted.   Even with all the other things that seem to conspire against them, their own personal  choices are the ones that will give them what they want, employed or not.

In my opinion.... and I've not worked full time for 4 years.

"What will complaining do after the fact, after irrepairable damage is done - nothing and doctors seem to enjoy a certain immunity to what damage they cause to others in that they appear to be able to get away with not only their mistakes but also their poor attitudes."

Well, for me, complaining gives me the satisfation that the b*stards who caused me problems had to go to the trouble of replying!   If I don't complain when I see an injustice, it's like bullying, and I'm assisting the bully, letting him/her away with it.  Even if what I expect will happen, happens, at the very least I have satisfaction, guaranteed!   

Science, indeed medical science does not know everything yet, not even about the XX/XY majority before we even get to SCA's, and there still is a certain closed minded attitude prevelent in the medical profession which does not help further understanding.

And facts, facts are only valid in conjunction with the current theory, where of course with new understanding theories are subject to change.

And of course the only thing XXY has in common with another XXY is the karyotype, for just like XX and XY and every other SCA,  we are all different.

Thanks for your feedback.  I'm sorry, I am unfamiliar with what an SCA is.  Would you mind illuminating?  Sorry.

So, can I conclude that many medical professionals make unfair assumptions about XXYs that aren't based on facts or that perhaps the empirical data/trends discovered have some validity, but don't apply to ALL sufferers, thus dragging everyone down, perhaps.  That wouldn't be fair, would it?

SCA = sex chromosome aneuploidy, what the medical calls any that have an extra or a missing chromosome in their cells i.e. variations of the XX/XY norm that have three or more chromosomes or have one as in the case of X0 Turner's Syndrome.

As to what assumptions medical professionals may make about XXY, there are a number of XXY's that disagree with the medical as what the medical believes does not equate with their lived experience and sense of being.

Where did you know this, not all XXY's can tolerate the standard medical approach of testosterone therapy, where there is suggestion within the medical that the intolerant are blamed for being intolerant of what apears to be thought of as the panacea for all things XXY, as if the medical opinion is they are choosing to be intolerant, where what could also exist is just lack of knowledge, for just like every other variation of human, everyone is different, everyone has their own unique body chemistry.

But then, there is more to human than hormone levels, where many wonder in the case of XXY is hormone levels the whole of what the medical believes an XXY to be.

 

Yes, we are ignorant according to XXY suffers because XXY sufferers choose to keep us ignorant. 

There needs to be a lot more education to the general public about this, expecially if 1.3 in 1,000 has it, don't you think?

Part of the responsibility lies on the XXY people to tell us what we don't know, so that we can understand and not be judged for being ignorant of what we can't possibly know.

There's a lot more to each person, I agree.  We are not our illness/condition/label.  We are human beings alike.  The more we focus on differences, the more seperate we remain.  Truth.

I had no clue about this before last week.

Thank you for sharing.

Everything out there on the web about us is negative where of the support groups I am involved with there are on ocassion scared pregnant women asking for advice on what they carry where the medical has told them they carry XXY and they report the medical has filled them with negativity as regards what they carry and are advising them to terminate their pregnancies. The actual figures for termination of XXY pregnancies is actually quite alarming, all of which is based on medical advice where the medical clearly has a negative view of us to be advising such.

Thankfully on the support groups there are mothers of what they say are delightful children for those mothers chose to ignore the almost eugenic drive to terminate, based on what exactly, what the caring profession believe, the afore mentioned negativity all over the web, negativity perpetuated by the medical profession itself for we are disorders to them through the term DSD meaning disorder of sex development, a term they believed was kinder than the older term intersex.

And if one looked into the support groups, one could come to the conclusion that we are basket cases given the pain that is often exhibited but what one has to remember of support groups is who is likely to be active within support groups, how about those that need support as for sure the world population of XXY is not in them, in fact what is vocal online in such places tends to be a tiny fraction suggesting the majority are not basket cases.

As to raising the positive awareness of us, I agree and I also know there are activist XXY's actually engaged in that now where I am told, it's coming for actions are being taken for it has been recognised the medical negativity is contributory to our negativity and it has gone on  long enough

But as to why we have been quiet, well for many men XXY is a source of shame, not helped by the medical of course of which appears to want to keep us secret where can you believe it XXY is the most common chromosomal variation in humans and hardly anyone knows about it including GP's from my own experience. Four so far who all told me they know nothing about XXY and don't know how to help, where one of them I had to actually tell him what the post diagnostic process was as he didn't know what to do after I had been diagnosed and there are still some questions to be answered.

"actual figures for termination of XXY pregnancies is actually quite alarming"

I have NEVER seem actual statistics of abortion for XXY pregancies.  Where do you find your statistics?   The only statistics that exist in NZ relate to foetuses that may be metally retarded, and I presume the XXY's are included in them.

You talk about information on XXY's being negative, yet you a talk of Eugenics in a negative fashion, totally miusunderstanding the concept. Eugenics is about improving life for all humans, not eleminating defective individuals from the population.

Please do not refer to anything from the Nazi's, their record on human rights is well documented and worthy of only disdain.  

Some people just like to complain.  "Sex Chromosome Abnormality" is a title I know of. So is "Sex Chromosome Aberration."  I think "Sex Chromosome Aneuplody" is an excellent description, as 'aneuploidy' means 'not the usual number.'  

If you have a pair of balls and a penis between your legs you need testosterone to be healthy and happy.   Certainly you were made with a pair of balls and a penis between your legs by the influence of testosterone prenatally, and in order for your sex organs to function in childhood testosterone is produced to achieve that end.

In reality some testosterone is converted to estradiol (oestrogen equivalent) in the testes of all males, including XXY males, indeed by way of information from Canice Inoz the conversaion rate is substantially increased in the testes of XXY males.   This is because the testes produce insufficient testosterone to allow enough to be converted, and the brain recognises that deficiency and steps up conversion.

Oestrogen is required to bring about epiphyseal closure, which when it does not occur the individual grows far too tall.  This is why females are generally shorter then males, as they have large amounts of oestrogen at the start of puberty, whereas males need their balls to produce ever increasing amounts of testosterone to be converted, which takes much longer.  Obviously if the testes fail to function that ideal rate is never reached, or reached much later than the optimum time.

So adults choosing to be stupid and refusing testosterone therapy, all well and good, they can choose whatever they like.  But adults having an influence on other peoples childrens' welfare, absoultely NEVER. This is what the crackpots of the intersex crowd want to do, and it will never happen.  In order for children to go through puberty properly, they need sex hormone, period. 

You give me the impression you don't know a great deal about genetic science, yet you wish to complain that those who do, don't know everything, well how do you know that?   I can list a couple of things geneticists don't know, such as; 'How do the cells know which X to inactivate?'   'How do the cells know how many cells there are?'  

Do you know that every person conceived initially has all the requirements to be either male or female? 

I don't pretend to know a lot about genetics science, and I certainly can imagine that you have put in a good great deal of time and energy into it, because it affects the most greatly. I am here to learn and understand so I can be compassionate with a loved one with the condition who has hurt me very big very deeply. I do know however, that we all have the propensity to be female and that the female is dominant.(genetically-no offense)

In the same manner you find everything else, you search for it, it's all out there on the web, and if you were involved with the support groups, you wouldn't have to search for from time to time members bring up what they have found as regards what interests them.

Yes, everything 'out there' is negative, everything is what illnesses and what mental/cognitive apptitudes XXY's won't have, where how do you think that is impacting on say a mother carrying what has been identified as an XXY child ?

And the rest of us, the amateur researchers, what do you think the constant reading of negativity can do to a person ?

And eugenics, you say '' it is about improving life for humans '', who gets to decide what is improving life ?

You as an XXY must agree given yourself what negativity doctors are promoting to cause a pregnant woman to consider termination is incorrect as to think if the same was applied to your mother when she was carrying you, you might not have existed, of which means you wouldn't be all over the web as you have been trying to educate both XXY's and those connected to them, your existence could have been denied based on what it is clear doctors don't know and despite so much evidence coming to light as to the actual reality of XXY, even untreated XXY through late diagnosed, what the doctors are promoting via the medical literature is simply wrong and with it damaging.

As would you agree you are of low intelligence and perhaps alluding the to that controversial paper, likely to be of criminal intent ?

Do you see the potential for damage not only to pregnant mothers and XXY's but to society itself, when of course the unaffected goes looking for information on what they may have come across in passing, perhaps even an employer or members of the legal ?

And eugenics, please search the term as it applies to modern medicine, you might be very surprised at what you don't know.

 

Those are all very good points. Thanks. Yes, I know if that 1968 paper, but the behavior of my husband fits the "Dark Triad" paper, too. Don't think he's being treated with hormone replacement therapy. If he did, would his possibly sociopathy change?

I know sufficient as regards genetic theory but I prefer not to dwell on the hard science that is out of reach of most people whom I am trying to reach out to's interest, for have you noticed this at all with people, unless they are specifically interested in what is a specialised subject, they will be mostly polite and appear to listen but in reality the shutters have come down long ago ?

Glazed eyes, have you seen them, of course you can't on the internet, but you can imagine such may be the situation and so you could in effect be not communicating what you hope to communicate. And so given my observations of people when I have tried to educate as regards my autistic like special interests, I have observed what I have and so have learned it is perhaps not the best approach to blind people with science for such can come across as  being baffled by; to be polite: male bovine faeces.

And of course humans are much more than dry old genetic theory of which is not yet fully understood, thay are living, feeling creatures, with lives and experience where I hope to communicate on a human level where perhaps I may be better understood by the majority. But then I am one of those softer gentler XXY's of which you appear to disagree with as if it is you are right and everyone else is wrong.

Nothing is right and nothing is wrong, there is only perception and of course the world needs all kinds of minds.

The possibility for sociopathy change with hormone therapy, there is much evidence to suggest such is so and is often mooted as a positive for XXY people, but where there are positives there are also negatives as life isn't that simple but you may understand where promotion exists in anything pharmaceutical anything that is negative does not receive the same amount of attention despite the damage it may do to people and their surroundings.

Then there is of course the lived experiences of people themselves quite distinct from the prevailing theory and such words as majority, people whose voice is only heard in support groups where there are people who report such negativity from hormone therapy they have chosen to desist and find another way, often on their own as the medical appears not to be interested in helping those that do not comply with the promoted.

Just like the XX and XY population every XXY is different with different body chemistry's ergo, one size cannot fit all, but it is assumed one size must fit all or else what is negative is all in the recipient's head, i.e, not real.

Ok, thank you for sharing your views. I am so grateful that you have been generous with your time and have explained these ideas to me in your words. So, can you clarify? If there is a possibility that the Souci up as he may subside with one on therapy, can we assume that the sissy up at the is directly or or indirectly tied to the condition? In other words, is the pain and social stigma from feeling different the costs of sociability or contributor along with biology? Anyone?

*souci =sociopathy

Sorry

Theory is not hard science, that's why it's called 'theory!' 

It seems to me there are plenty who just don't know anything about the nitty gritty of SCA's and XXY specifically.   I'm totally disinterested in anecdotal hearsay.  The number of dumb ideas perpetrated by those in the 'don't know' is astounding.  

I just wonder if I can find another person who has scientific information I can look into, even if they themselves don't understand it,  like the information I got from Canice about elevated conversion of testosterone to estradiol in the testes.  

If men with KS and XXY's had anything to offer with their observations and anecdotes, we'd all have been diagnosed by ourselves!

Don't you first need to discover if he is XXY?

I have tons of information about SCA;'s and XXY and KS, and a few of the titles annoy me, but none of the content does.  In fact some of the reports are positively uplifting.  

Eugenics, when you can show me yourself what you think you know that's negative, I'll consider it.  I've seen epert deceivers use that tactic of saying I need to research a topic to uncover their specific information, without them actually pointing to it.  Mishakailana of YouTube is a dab hand at that type of decepion.  The person who's been in transition since 2008 and hasn't advanced a single step, as he is a fraudster, a female impersonator possibly, but not a hermaphrodite, not X0/XY mosaic, not a Turner male, not a CAH sufferer.  He is a fake.

I am intgerested in abortion of XXY's, and when you have some facts to back up your assertions, I can go check them out.

 

Sorry Graeme I find your ridiculing of a person who is nothing to do with this conversation and is not here to defend themselves from your accusations quite apalling. Where perhaps you should understand though there may be currently thee me and Jen in this conversation, this is a public forumm meaning others will be watching and undoubtedly drawing their own conclusions from your current behaviour where your internet credibility could very well be at stake.

Abortion rates of prenatally discovered XXY, you mean to say you can't be bothered to confirm or reject by searching for yourself and especially so given your boast of tons of information about SCA's, XXY and KS indicating you are capable, where I think you aren't as interested as you say you are.

But for the benefit of others who may be viewing and who are interested, a profitable search term is

 Klinefelter Syndrome and Eugenics

And for you Graeme if you truly are interested in the abortion rates of pre natally discovered XXY, whether you like it or not you are going to have to delve into neo-eugenics

It seems to me Graeme, you have nothing further to offer, hence why you are not saying anything, anything useful that is.

A mind set in it's ways is a wasted - don't do it !     by Eric Schmidt

Mishakailana is not a real name, but I can use his real name if I wanted to. I'm sure I do in my blog.  Mishakailana is an absolute fake. Mishakailana does what you're doing, making outrageous statements and telling those asking to go look the outrageous comments up for themselves, well if that's the best you have, you have nothing.

Eugenics is about improving life for everybody, if you have anything concrete against that, bring it forward. I will not ask again.

I know mothers of XXY's are offered abortion. What I don't know is how many accept the offer, and you appear to not know either, as that is information you again fail to produce. 

It seems to me you've never had anything but misinformation, anecdotes, and doubtful theory to offer.  If you're prepared to make statemetns be prepared to answer questions of them, citing sources please?

LIke a comment I got from Canice, it took me the best part of 2 years to come up with an answer, but at least he had a source to read!

I understand why you are not involved with support groups now and it's not because of everyone elese.

'' He '' ?

And as I have said, if you are truly interested you will investigate yourself, but you are not are you.

Well you are chaning the topic, but I get it, if you can't back up what you say it's much easier to attack the asker than admit you can't back up what you say.

I don't need support.  I have trained medical professionals for support. I certainly don't need people who develop crackpot theories based on fanciful ideas of genetics, also known as 'common knowledge.' 

Here's a classic piece of 'common knowledge' 

"XXY's have 3 simultaneously, fully functioning, sex chromosomes."  

Some XXY's say they're XXy, to give the impression both their X's have greater genetic influence than their Y.  However when they study X Inactivation they will learn that the inacticvated X only has the pseudo-autosomal regions functioning, compared with ALL of their Y, which is fully functional and enmormous in size, in that comparison.    

Yes. Mishakailana is an absolute 100% genetic male, with a tendency to be flamboyant and attention seeking, not unlike a lot of female impersonators. See Danny La Rue.

I have friends who work & study in the field of Eugenics, if I have questions I know who to ask.