I'd like Patient UK to change some information?

Posted , 8 users are following.

Hello, I was suspected of having Klinefelter's syndrome in late 1975, I was karyotyped in 1976, and I began therapy in 1977.

I have been studying Klinefelter's syndrome since 1976. I believe I am the most knowledgeable patient treated for Klinefelter's syndrome in the world. I certainly know more about it that ALL but 1 of the doctors I have met. Most doctors haven't got a clue.

The information here is old and out of date. It promotes all the commonly held misconceptions about what KS is, and how it's caused.

This is information from a British doctor:

"An unduly pessimistic description of what it

means to have an extra X or Y chromosome is

frequently given to the parents of an affected

fetus or child by geneticists and paediatricians

because the source of their information has

been biased towards abnormality..."

Dr Shirley Ratcliffe

"Long term outcome in children of sex chromosome abnormalities"

1999

I'd like to influence Patient UK to update it's information about KS, to make it more appropriate and representing the truth. I think truth is important.

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  • Posted

    I'm the father of 2 children gentlemen. We all know who the donor of the sperm is but my children have only 1 father, me.

    Families are about relationships not genetics.

    End of story.

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  • Posted

    Thanks for that XXYGuy, I'm slowly coming around to that idea but it's still raw for me, especially when I have brothers and sisters with children plus loads of mates who have the same. I also work as the only male on a female staff - at least two of them are pregnant at any one time - so there's always something to remind me.

    I've only known I have KS since April so loads more adaptation required.

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  • Posted

    When I was 17 it was the end of the world Bikerunner to learn I was sterile, and I was sterile too. There was no possibility of any kind of therapy no matter how much could be imagined. It was a huge worry fr me for many years, and I wasted a lot of time in that worrying state, only to come to the same conclusion over and over again. There were also all the other issues I had in my life that I had no idea had any relationship to being XXY. I didn't start understanding that until well after I was married. So it was the end of the road for me, I'd totally had a enough of living, when I was 17.

    There was no information other than library books, and they were so far out of date, according to one library I was mentally retarded. I got some hope out of that, I can't have KS and I'm not mentally retarded. That hope lasted about a week until I got to another bigger library.

    I was hopeless at talking so even if there was someone to talk to, what was I going to talk about? I wanted to read stuff, and there was nothing. There was no internet, the same as everybody before me and for many after me. The generation since 1994 in New Zealand has been the most well informed generation since 1942, and still, for most of us, the possibility of being naturally fertile is zero.

    When ICSI was first developed it was toted as being the 'cure all' for all XXY guys, but that isn't the case. It all depends on two things, 1, how big your balls are, and 2, how skilled your surgeon is. The newest technique for ICSI involves removing entire Seminiferous tubule bundles from the testes, and micro-disecting them in a dish (effectively) it is much more complicated than that.

    My testes were officially 1.0mL bilaterally, but that's only because the orchidometer only goes down to 1.0mL In reality they were both much smaller than 1.0mL and whatever testosterone they were producing was enough to not cause LH to rise, and there was only a slight increase in FSH. So I didn't fit the pattern expected. I'm not excessively tall, and I never have been. I was really interested in sports as a child, I even got picked a couple of times for our Primary schools Rugby team. I enjoyed sports, and I was very competitive before puberty, and after the start of it too.

    Anyway, I don't know how big your balls are now, but they need to be about 6.0mL in volume for you to have any chance of having just 1 sperm. I do have a picture on an XXY guy with balls 6.0mL's so I know it's possible. And Dr Silber says 'the bigger they are the better.' So less that 1.0mL is really not big enough.

    XXY is chronic, KS doesn't have to be. Do every legal thing you can to have a family, if that's what you want achieve it, don't just worry about it, do it. When you've sacrificed everything you own and have not achied a family then you can say 'it's impossible' until then anything is possible. If you give up you'll spend your life regretting it. So don't give up. Whilst there's still breath in your lungs there hope, take my word for it, if you can't see anything good in your words.

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  • Posted

    I was told l had klinefelters syndrome when I was 31. Am on nobido testosterone replacement. Am gay wonder if many KS are gay l have just had a fertility test waiting for results am a 47xxxy. Are there any gus with KS in Uk
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  • Posted

    Hi Kuda, you'll probably find that there are similar percentages in the XXY community who are gay as there are in the XX/XY communities.

    To my knowledge you can't do a genetic test to see if you're gay or not. You may find there are more XXYs in the bisexual community but I can't prove that at all.

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  • Posted

    Normal males produce between 50mgs and 70mgs of testosterone per day. They make it when they're resting and use it when they're working. Every single day they have fluctuating levels, yet we're to believe a 'steady same' amount is desirable. I'm not convinced. I have stopped all injectables as I used to give them to myself and one day, last November I think, I just lost my nerve to do it anymore.

    When I was a teen and young adult and was not responding adequately to the level of testosterone I had, and noticed, but was told 'it takes time' and as time progressed nothing changed. That's the problem with waiting for time to pass for variable reactions to occur. When I was 38 and my then wife noticed I was as developed as a prepubertal boy in certain areas, more action to 'catch me up' was required, that's where the injections have the advantage over any other method of delivery.

    So how each individual person responds to their therapy will determine what course of action they will take. I've now resumed Andriol Capsules, I take 160mgs per day, that's 4 capsules. Usually I take all 4, some days I forget. I also forget to take them at the same time when I do take them. I have a fluctuating level. However my hair growth has remained the same as when I was having testosterone by injection, whereas I was taking Andriol when I was a young adult and had no facial hair growth at all. I had no body hair growth, and minimal pubic and underarm hair growth.

    Sexually, when I was a teen and young adult I'd seek out sex with anyone, if we liked each other we'd have sex, like Alexander the Great! Finding a female sex partner was much harder after I was diagnosed than before as I always had in the back of my mind that she might want to have children, and explaining XXY/KS to anybody was hard work. I'd rather not even think about it, let alone talk about it, but how can I form a relationship knowing I was infertile? It would be better for me to have sex with males and never need to consider the question.

    I think sexuality is a choice depending on circumstances. It was just sex after all, it wasn't like it was going to kill me! That was before the era of HIV. Then I discovered some females prefer infertile males, that was a bonus. When I was younger I didn't need to consider families, or relationships beyond the most basic, and I didn't have the skills to consider such things anyway. Not being manly looking enough for me, wasn't considered by young women who just wanted sex, and many young women do just want sex. It's a man made myth to think that males prefer sex more than females.

    If you find someone you like and want to have sex with that person, go for it, you'll have plenty more regrets if you do nothing than you will have if you make an attempt and fail. As that saying goes, "It is better to have loved and lost, than never to have loved at all." As for why you feel sexually attracted to someone, or who you feel sexually attracted to, don't worry about such an insignificant thing. Telling XXY guys not to worry is like telling water not to be wet! But do your best anyway, you'll only ever regret not trying.

    In my opinion.

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  • Posted

    I like all what you said there xxy guy.

    I'm on the nimbido quartly injections.

    My appearance was always, almost normal!!

    Now got some more hair on my back & can have a full face of stubble, in a week.....

    When diagnosed with Kf, my Testosterone level was like scarily low - 1-2 & that was in the morning.

    So my doctor freaked & prescribed the jab immediately!

    In fairness i can't remember all he said, my memory is atrocious!!

    I keep telling my wife that it's because of Kf, but that never cuts it ;-/

    Thanks again for sharing your wealth of research

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