Do you discuss your KS?

Hi Phil,

Same goes here - wish I'd known when I was younger - would have made a lot of decisions easier and maybe I would be in a better place.

Ash.

It was known when I was younger that there was something wrong with me.  I was taken to educational psychologists when I was at primary school. I was a regular attendee at the Headmasters Office for strapping (punishment).  My dad was a very highly thought of Unionist, an educated man, how coud he have such a defective son like me?  I didn't relate to people, I'd just stare at them when spoken to.  I'd look like I could hear an instruction then do the exact thing I was told not to do. They (people giving instructions)  were certain I did it deliberately.

Apparently, I'm told, the Psychologist woud give me tasks to do, and I'd do them, then out of the blue, not do them, as if I just set out to p*ss him off.  I looked like an angel, but behaved like a devil.  I was a really cute little boy.  I've seen photos of myself back then and I'd agree, I was ultra cute.  I think that made it worse for people, I looked angelic normal, but behaved weird.

It was determined that I had Petit Mal Epilepsy.  That's a psychiatric disease diagnosed by way of observation of behaviour.  There isn't a blood test to take that proves it.   The drugs In was given my parents were warned would make me very moody, and they sure did!  They performed that function really well.  They didn't stop me from being a regular attendee at the Headmasters office though, personally I bet they caused it!   I took those drugs since I was 4 and a half.  By the time I started primary school at age 6 it was forgotten to mention to the teachers and principal that I had a psychiatric illness that was whucking up my life!

I actually had AD/HD Inattentive Type.  That's also a psychiatric disease, also diagnosed by observation of behaviour, there is no blood test to prove it.  And the medication I take every day to alleviate it works a treat! It doesn't make me moody.  My brain doesn't turn off with no warning, it doesn't just turn off at all. 

Go look up the symptoms of AD/HD Inattentive Type and the symptoms of Petit Mal Epilepsy and see how they can easily be confused with one another.  

Oh so I now know that even if I had the right diagnosis nothing would have changed.  I'd still have been repeatedly beaten by my parents and teachers and headmaster, I'd still have been considered a boy who looked like an angel, and who behgaved like a devil, as the medication I now take was, back then, not approved for use in children.      

I have told my family and a 2 gay acquiantances. That is what gay people refer to when they are not close friends with gay people. One was a friend for several. yeats but he tried to bankrupt me, so he is no longer a friend. I thought he had my best interests but I was wrong. Some xxy males tend to strike up a friendship because their is a urge or something else that drives us to seek friends. One xxy teenager in Colorado did just that. He thought 2 teens were his best friends but they killed him over an Xbox.

I have seen a xxy boy at a convention and he was friendly to everyone. His parents tried to steer him from strangers but they said they couldn't break him from that habit.

I met another xxy mother who stated her son had AD HD and he was taking drugs to help him cope. She said he wanred to go into the military but I had read that the US military would not accept men who were prescribed the medication for AD HD because they thought those men were unstable. I don't know if that has changed or not.

I used to correspond to several gay xxys by mail. I put an ad in gay newspapers seeking other xxy's. That was about 20 years ago. I got about 10 different responses. But never kept up with them. I had given them my post office box numbet, which I still have, but no has ever contacted me since then. I assume they either found others or they died. Most were in California and that was during the AIDS outbreak in the US.

But this forum is the best way to reach other xxy's. I found found other xxy's on other forums. for example, urination problems. Since I have had this leaking urine for over 40 years I don't mind discussing my problem. I also found another xxy on the forum for testice pain. And they one person I referred to this forum wanted to know about artificial. balls.

I have so many other medical problems besides xxy and I am able to express my thoughts on alot of topics on this website.

I have told everyone on this forum I live in Denver Colorado in the US. I am 65 years old .I have no foreskin. I am small, penis size is is 5 cm to 10 cm, so to erect and girth is 10 and one half cm to 11 cm.around. My balls are the size of hazel nuts. So you see I have no problems discussing my xxy status. I weigh 66 kilos and I am 165 cm tall. Quite short for an xxy male..

I am too old to worry about what others may think of me. When I first corresponded on this website I labeled myself as Unique based on all my 20 or so medical problems.

Like I said, too old to worry about anything anymore.

I hope that answers your question

"I met another xxy mother who stated her son had AD HD and he was taking drugs to help him cope. She said he wanred to go into the military but I had read that the US military would not accept men who were prescribed the medication for AD HD because they thought those men were unstable. I don't know if that has changed or not."

Even if he doesn't take AD/HD drugs he won't get in as he'll have other preexisting medical needs, and the military want healthy people.   

Do you get on Facebook,,, there is several support groups there,,,, search klienfelters syndrome,,, 47xxy,,,   they have meetings,, you can meet other guys with same type of,,,,,

Between 1976 and 1990 I spoke very little about it to anybody.  I was diagnosed in October 1976, about the 18th or 19th, certainly not the 20th as that's a holiday.   I've had reason recently to think about when I was first diagnosed and what happened next.  I in fact had two  medical examinations on the same day, by 2 different doctors, both concentrated on my balls.  Not events likely to be forgotten about in a hurry.

So from October 1976 nobody  I talked to, who was not a medical professional, believed me.  All the available information said men with KS are mildly mentally retarded.  I wasn't in any way mentally retarded.   The information said all men with KS had gynaecomastia, were obese, were over 6 feet tall.  I had none of those things too.  I was accessing the same information others could access, public libraries, not a very up to date source. 

It wasn't until 1990 that I got tired of knowing nothing, other than the tid bits I'd been given from my Endocrinologist, that I set about finding out more, but that didn't involve talking to people.  I looked at the information I had, I saw who published it, and I wrote to those organisations.

From the information I received from my first letters, that was brilliant, I did the same again, looked at the publishers and wrote to thgose organisations.   I've now got a whole filing cabinet full of very old reports about men with KS and suposedly children too.  Te general public knows as much today as it has always known, buggerall!  

Unless there is a reason to impart knowledge to the general public, it's just a waste of time, they don't know anything and they have no reasson to know anything.  However, every now and then a parent describes their child maybe being very tall, maybe having AD/HD, maybe having a non specific learning difficulty, and I'll invariably suggest the boy or girl has an additional X, and the parent might like to check it out? And often the answer is yes they do have an additional X.

There's no real reason to talk about Klinefelters syndrome itself.  The only people who are really intetrested in talking about it are those who have it.    

I think, as people get older, they forget things because they don't practice remembering things.   Remembering is like other skills, if it's not practiced regularly it's lost.  "Use it or lose it" as the saying goes.  

 I was 17 years 3 months old when I was diagnosed.   I'd been working for more than a year after I left school.  I was supposed to have a medical at the first job interview I had at General Motors, but the doctor was away the day I had my interview.  If the doctor had been there, I would have been diagnosed then.  Palpating male potential employees balls is standard practice I discovered.  Firm small balls, and being ultra skinny, with no musculature, is common for teens with KS.

I have heard mosaic xxy's can have children. It just takes a good doctor to see if try can get viable sperm from your testicles. Other xxy's have tried to get viable sperm, but it is very costly for the procedure but it doesn't always work.

Since I am 65, I don't mind di my problems with xxy on this forum.

I have told a few people (non relatives) about my xxy because I am very confident about it. I usually tell them to look on the Internet for 47 xxy, if they want more information.

Some xxy's fear they would be ridiculed being an xxy but I can understand where they are coming from, because I felt that way when I was diagnosed at age 29 in 1983. But at least it explained alot of my problems as a young child.

I knew I was different but didnt know why. Until maybe in 10th grade when I saw other boys my age had bigger sex organs than I did at age 16. during shower times after gym practice. I also didn't have any muscle tone at that age, even though most of my male classmates did. I was easily taken down during one wrestling match and I couldn't do any pull ups, you need muscles in order to pull your body up to the bar.

Nowadays, I tell everyone that I am sterile due to a hormone disorder. Even though I get testosterone injections it doesn't make me sterile. In the past, I thought it would be great to have kids but after finding out that I would never have kids, I adjusted to that fact.

But it is very hard on men who get married and then discover they cannot have kids.

I heard a conversation from an Indian man from India who said it is a tradition for men in his country to have kids and if no children are born it is very likely his wife would back out of the marriage because he was sterile

Every country has different criteria regarding birth rights. But since you have a different problem besides xxy, it can cause alot of anxiety when your wife expects children and you can't have any. I am sorry you don't have anyone to help you cope with xxy.

If you live in the UK, I thought they had a place you can go to where you can discover other xxy's

In Australia. there is a place

I hope you can find other xxy's in your town. Good luck

I've heard that any XXY's can have sperm in their ejaculate or inside their testes.  I've heard that some 50% of all XXY's can have sperm extracted from them.  However Dr Silber, you can find him on Twitter,   asserts that the bigger the XXY's balls the better chance of finding viable sperm. My less than 1,0mL  volume balls would not have been suitable I think.

They're not really mosaic XXY's are they, they're XY/XXY's.   I met an XY/XXY once and he seemed concerned that he wasn't very tall,   well I'm through and through XXY and I'm not very tall either.  

I noticed my friend had a bigger penis than me and I just assumed it was because he was Jewish and the foreskin he didn't have wasn't there to restrain girth and length growth as it was with me. I could ejaculate as well as he could so what difference did size make, I thought.   What I didn't notice was trhe size of my balls,   and neither did he.  Size of balls did come up in Biology class, but I never actually conmsidered measuring them, nor did I consider testing myself for sperm, I just assumed I had sperm.  We were taught how to do a sperm test, I just never bothered.  Imagine, I might have diagnosed myself if I had?

  

 

Thank you for your kind, comments,,,,  I do appreciate that very much . Yes we wanted children,, though it couldn't happen . Now I am 53, and my wife is older than I,,   so we are making the best of it . And yes it was a difficult time when it wasn't going to happen because of xxy .  I felt odd growing up myself,, shy,, didn't have to many friends like most people,,, still dont,, wish I did .