What is the disease Klinefelter's syndrome is the symptoms of?

Yes it certainly is a major difficulty, I think the most major.  My problem came from knowing, how can I start a relationship knowing I can't have children, and back then there was no fertility treatment nor any thought that an XXY man  could be fertile naturally.

When I finally go confident enough to ask for sex, I had to try to explain contraception was unnecessary, then the HIV epidemic erupted and at least that problem was sort of solved.

However, today I have a teenage daughter living with me, a teenage son living with his mother, we're divorced, and finding a sex partner is simple.  In the situation at the time things seem incredibly difficult, then as time gores by things sort themselves out and life continues. That is of course absolutely no consolation for those struggeling with infertility.

By the way, we used donor sperm. My daughter has met the donor, and of course knows I'm not the genetic provider. We chat about XXY and KS regularly.  Families are made by relationships, not by genetics.

Yeah we went for all the tests donor is the only option but it's so expensive and not sure we can take the heartbreak every month :'(

Hi, its not easy. I found it hard to start with, as you cant really tell people what you got and they would not understand. I have two sons, by sperm donor. We were told to have sex the night before the sperm was implanted, and to have sex the same day afterwards, so you just put it out of your mind, but it stays with you all the time. My boys are great I'm very proud of them, but it may come out one day. KS is not common, trying to talk to people with it, is very hard, as you do'nt no anyone with it, that was hard with me. But I have had this since 1989. But with it comes all sorts of illness. I have heart problems with a pacemaker fitted, diabetes, probelms with my bones having 3 spine operations. Thyroyd probelms. name but a few

We only found out last year so yeah its all so raw my husband is 27 think that maybe the nhs let him down 

I used to live in London, and even though there was a medical health check only my genitals were not examined.  Unless all the other boys at the school and I knew lied to me?

Medical research doctors all recommend proper medical examinations at the start of puberty and at the expected midway point, but coal face doctors are always pressurised to do excaminations for all sorts of other issues, and you can best believe the genitals of males are not high on their list.  

The only really useful examination would be a genetic test at birth, as Denmark does, but that costs money, and governments rarely want to spend money for a variable result.  It's better financially to do nothing and wait for individuals to come to them, rather than find the XXY's before they've developed any symptoms.    

Hi, not well known is not the same as not common, in reality 1:500 to 1:1000 live male births is very common, even at the 1:1000 rate.  The problem from my perspective is it's all about sex, and talking about sex is a taboo in almost every country, even for doctors it's taboo!  So how do we get a very common condition better understood when talking about it is taboo?  

Even if we never mention KS, we're still talking about sex when it comes to which chromosome we jhave extra, whereas Downs' syndrome is about 'chromosomes' but sex doesn't really come into it, even though sex is the means it comes about, like every other genetic problem, such as Parkinsons disease.

Parents of XXY boys probably think they have the worst job out, they will have to talk about their sons' testes with their son, coming from the same society that frowns on every sex topic there is!  I'm sure they'll see it as negative as mental illness in children, that most never want to admit occurs!  

I think it was because I'd known of the matter for so long before we set out for a family, that I knew it would be a long and tiring process, like training for and running a marathon!

For people who are just new to the diagnosis as you and your partner are, it's all going to be looking like a daunting process, and there's no getting round it.  The expense is the easy part, money can be found, sperms are much harder to come by, as are fertilised eggs.

Yes its not easy, I had counsilling as I could not carry on with the knowing I could not become a dad. So my wife had to have some tests done to make sure she would be ok for donor. Which she was, and all we had to do is wait till the right time in the month, phone hospital and go over to southampton, took a few minutes, then had to wait to take its course, which worked. 9 months later we had a baby boy, Matt. then 4 years later it happen again,but I was a bit worried as what the baby would look like, as normal the baby looks like one of his parents, it turn out ok, both looks like my dad side of family, they match the donor very well. With this KS, there are not many people that I know who has this, and speaking to my GP last week, she said I was the only person she knew had this, but it always come's up when i have to attend a hospital appointment

I know there ain't many matches since my hubby has ginger hair and blue eyes lol. We have 2 boys from my previous relationship but really want one child together. 

He's scared I will sleep with someone just to get pregnant he doesn't understand that it effects me as much as it does him

I'd be scared of being left for a fertile guy.  It's not that unusual, I've even met parents who discovered their son is XXY, and had another child to replace him.  It seems to me you're both in a precarious situation. Sometimes the couple agree to separate. I know of two XXY men that's happened to.    

I beg your pardon, you are their real dad!  Dads' are made in the forge of a family, not determined by numbers of sperms.  Any fetile male can be a sperm donor, there are plenty who are just that, not dads at all, they don't even care if they have children.

You need to trust your children, IMO, they're the ones who know who their dad is, the guy who pays the bills, sends them on holiday, buys gifts, treats their wounds, plays with them.  What sperm donor does the hard graft? 

We just incorporated XXY into sex education, it was easy, it is easy. Such as "most males have testes that make sperm, but my (daddys') testes don't make sperm and we got some from another man."   The intriciate details of how the sperm was delivered can wait until teenage years.  Try it, you'll see how easy it all really is.    

Hi

we had to have help with the hospital, via a sperm donor, no I'm not a real dad, but saying that, I'm a dad, there dad, who brought them up from baby to now 22 & 18. When I was told I had KS in 1989, I just fail apart. Knowing i could only shoot blanks, it was not easy, but got through it and counsling

Well we'll just have to agree to differ, as I'm a real dad, just not a sperm donor!