What does it feel like to have Klinefelters' syndrome?

Talking about what it feels liketo have KS and talking about what KS is and when it manifests are all completely diffient topics.

Since way back in the days when I was diagnosed it was known KS does not manifest until after the onset of puberty, it's even written about in eteemed medical dictionaries as such.  I can't ignore what is written and what is known.

How about an esteemed American textbook on endocrinology, would you be happy with their definition, considering it were American doctors who first described the syndrome (symptoms of disease)?  Or how about the reports written before genetic testing was invented, that descrfibed Seminiferous Tubule Dysgenesis  - so complicated and hard to say, which was abbreviated to Klinefleters' syndrome?

Try this direct quote  ".....The characteristic features which first become manifest during adolesence are....."     

There are not such people as KS babies.  

There are XXY babies.  

XXY and KS are not the same thing.  

To say KS and XXY are the same would be to say XXY and AD/HD are the same thing, since AD/HD is a regular disgnosis in XXYs.  

Another frequent diagnosis of XXY boys is being underweight, failing to thrive, missing or delayed early milestones, are all those KS too?  Of course they're not, they are simply associated with being XXY.  

How many XXY babies are born witn gynaecomastia?  How many XXY babies are born over 6 feet long?  How many XXY babies are born with seminiferous tubule dysgenesis?  How many male babies are born with sparse facial and body hair?  How many baby boys are born obese?   So if no boys, or XXY boys, are born with these features of KS that become manifest after the onset of puberty, how many are born with KS?  The answer is:

"Nobody has ever been born with Klinefelters' syndrome."  

 

Can I argue that my experience of being XXY is like any other XXY males' experience?

No.

No, the only thing ALL XXYs have in common is being XXY.  

I have met some XXY guys who have led a similar life to mine, but not identical.  I just deleted an entire comment that I thought was pretty good, but oh well, it's not an XXY trait, it's human.  XXY males are human.

In my life I have met many people who were abused by their parents, and other people.  I have met many people who were abused at school, called bullying.  I have met XXY's who are bullies.

I have met many XXY's who are homosexual,  and heterosexual, and bisexual.  Are these human or XXY traits?  I have met XXY guys who are really clever, laywers, accountants, clergy.  I have met XXY guys who are like me, gardeners.  XXY Men and boys who have psychiatric disorders, psychological disorders, regular physiological disorders.

I am not immune to the problems of being XXY, or the problems of being human.

I am amused by the parents of XXY boys who seem to collectively think they're somehow brilliant parents, even though like most parents they had no formal training.  Being fertile is all that matters, to them.  Their fertility affords them authority. Of course it's not true, they just beleive it, as they can't bring themselves to believe they ever did anything to cause the XXY boys and men to have problems.

As Dr J Neilsen showed, XXY boys raised in poor homes did substantially worse than normal children raised by bad parents. Good parents are taught to be so, they're not just born that way. XXY men not doing well in society as adults can probably blame their bad parents, who probably were really bad.  After all the XXY child is often not known to be XXY until much later in life, when the bad parents have had years of bad input into their lives.  But even when it can be shown the XXY men are doing poorly because of bad parenting, as adults no quarter is given them, they will be penalised by society at large, until they can learn acceptable behaviour.

Being too young looking for too long was a big problem for me.  I don't have that problem now as I sought a remedy, and found one.  Oh yes it's not a lifetime sentence to be permanently young looking, it's all a matter of hormones, enough of them, or it really, enough testosterone will alter your life forever, if you want it to?  So when you've made yourself appear like any other man, you'll discover that which you thought caused you problems wasn't it at all, the problems will remain.  I guarantee it.

I have difficulty with learning, yeah, I have AD/HD Inattentive Type.  My mind just turns off at any odd time repeatedly throughout the day, or night, UNLESS I take my medication.  I have an extrra chromosome and its' effects in my life are profound.  Resolving how I appear made no difference to how I learn.  Testosterone was not the answer to the educational problems. 

And psychological issues related to  anger, and esteem, and confidence, they had no improvement because I took testosterone, or AD/HD medication, I had to seek other professionals for those to be worked out or through.  

Some things will never change.  A combination of bad parents, and that pesky additional X, and my inability to relate to other humans.  I don't notice all sorts of things, like when I'm pissing people off, or if the traffic light is red, or green, or amber. Like what the time is.  What day it is, what month, what year!

Why is it that XXY males are so different, yet in some ways so similar, have you ever asked yourselves?  Well the answer I propose is because we're human.  As human we have certain responses to certain situations that we learn.  Like we learn to scream and shout when we don't get our own way.  Well children learn that,and adults keep that learing if there's no other input.

In my opinion.

My son was diagnosed xxy in utero. I did not terminate and I have the most beautiful, sweet, loving child ever. I can take him anywhere, his therapists fight over him and at some point I feel I may have to take out an amber alert for fear someone loves him enough to steal him (I say as a joke, but mean it at the same time). My children all have big noodles (heads) thanks to their dad. He is 90 percentile in head circumference. He is three now and still not talking. His communication, however, is perfect. Recognizes all his shapes, colors, letters and numbers. He can hum to songs, dialog, and memorizes gestures to all of his favorite programs and videos. He is a great sleeper and he never complains... only when play is stopped and has to come inside. He loves people outside the home, but feels invaded when outsiders enter his home. With three children, he is the youngest. 18 year old, 5 year old and he is 3. He loves playing with his sister. He loves his cars and he loves her ponies. I love whatever he wants to play with. This is why we have genetic testing. To prepare, understand, and give our kids the best future possible.

I think the medical professions, particularly Geneticists, have a different idea in mind for prenatal genetic testing.  I like to think I was the most beautiful, sweet, loving, child too, but my mother had a different point of view.  She is known to have said "If I couldn't hit Graeme when he was a child, raising him would have been impossible"  So I wasn't brought up, I was beaten up.  It's true.  You think I have my negative disposition to life for no reason?     

Now I've met a great many XXY boys from 2ish to 16, and all were sweet, and loving, maybe they were not so beautiful?     

I dont know how people could ever terminate a pregnancy. It is beyond me. Having kleinfelters and not ever being able to have kids is something I have forever had a problem with. I love kids. I love listening to them and just love them. My sisters had kids and they are so much fun. I have been told I would have been a great father and it breaks my heart. I was diagnosed in 1992 at the age of 38. It still hurts and I will never get over it. Never. Love your children. Take care of them. Because some of us will never ever get that chance. Ever.

I would love to send you a picture. I bet you were beautiful. I am so sorry you had to endure what you did. My mom is English as I caught on you might be. My dad was Air Force so I grew up all over. You are close to my mom's age. She was a war baby, born in a bomb shelter. I really don't know what this has to do with anything other than I am hoping times are so different now. Just want to give you a big hug.

You have to remember that not all women can have babies either. My sis-in-law had so many struggles. I can have my sons sperm frozen at on-set of puberty. But, that is difficult to think about. I am sure you would have been a terrific father. My heart goes out to you. I take all of this day by day.

I think, it is better to have children who are loved rather than just children because they're there.   That said,  it would be much better to have XXY boys parents told they're XXY and have no syndrome, rather than told they have KS and might be mentally retarded, which is what is said.  

I can think of very good reasons to abort a pregnancy, but being XXY isn't one of them.  I can see how some mothers to be are just not cut out to be a parent.  Being fertile is not the sole prerequisite to being a parent, in fact if that's all the prospective mother has, and refuses to get an education, aborting will be in the best interests of the child.  Pro life is more involved than pro birth.  

Perfectly said. I think the hardest part is just hurting with your child through their struggles. Not just because of my xxy boy, but with ALL of my kids.

You have a wonderful outlook on life, and have reached many of the oppinions I have worked long and hard to come up with on my own.

Ok, how can I put this, mmmm, just because a child is fat and XXY is no reason to assume the XXY has anything to do with it.  Children and teens and adults get fat because their energy input is greater that their energy output.  Over the past 20 years those who live in western societies have been getting fatter, because of over indulgence of fat and sugar and lack of exercise.  Even people with Prader-Willi syndrome get fat for the same reasons everybody else gets fat, too much energy input, too little energy output.

XXY males are not born with Klinefelters' syndrome, as Klinefelters' syndrome is the result of insufficient testosterone over a long peiod of time. It is not testosterone that is needed for energy but a homone testosterone is converted into, in the testes of males, and that hormone is oestrogen.

Klinedfelters' syndrome is the outward expression of the disease of the testes called Seminferous Tubule Dydgenesis.  STD causes the testes to atrophy, or shrink.  STD can only develop after the onset of puberty. No boys prior to the onset of puberty have mature seminiferous tubules.  All boys have leydig cells in their testes, and leydig cells produce testosterone.  The reason even XXY boys have growth of their testes is because their leydig cells produce more testosterone at puberty.

Females, generally, are shorter than males.  This is because females get their growtrh spurt at the start of pubery and boys at the end. Oestrogen is produced by fermales in large amounts at the start of puberty, and oestrogen causes the long bones to stop growing.  It takes time for the testes in males to gear up to produce sufficient testosterone to be converted to oestrogen to oestrogen, to cause the long bones to stop growing.  XXY males tend to be taller than XY males as they have much less testosterone to convert to oestrogen, and their long bones don't stop growing as they should, cause them to be, in many instances, very tall and without the added musculature males usually have.

Puberty in males begins from about age 10 or 11, and the first outward sign of puberty in all males is darkening of the colour of ther scrotum.  Most likely you will not be aware of this change, unless it was pointed out to you, at the time.  All XXY boys begin puberty.  I know of no record of an XXY boy who did not atsrt puberty.  The degree to which puberty proceeds before the boys fails to proceed in puberty is wholly dependent on personal circumstances and genetics. Some XXY boys experience testicular growth to 12mL volume, but most   will only see up to 5mL growth in volume.  When I was diagnosed my testes were said to be 1.0mL volume, becuase the gauge only went as low as 1.0mL, they were in fact much less than 1.0mL volume.  I had otgher signs of pubertal development, such as enlarged scrotum and penis, and pubic hair,  I don't know to what degree my testes grew to until testicular atrophy set in, but their lack of growth after atrophy was spectacular!    

So like all other XXY's I started puberty, and like most other XXY's puberty failed to proceed.  Testicular atrophy is the first outward sign of Klinefelters' syndrome.

Inside the body the first  sign of KS is elvated levels of FSH, Follicle Stimulating Hormone, and LH, Lutenising Hormone.  FSH tells the testes to make sperm, and LH tells the testes to make testosterone. Typically both these hormones are elevated in males with the actual syndrome as they're not producing sufficient  testosterone to counter their production.  So long as the testes fail to make sperm and testosterone LH and FSH will continue to rise, wehn they ought to plateau.  So again, all XXY boys start puberty, and they do not have signs of KS outwardly or inwardly until their testes atrophy, after the onset of puberty.

Can you follow me?