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Klinefelter's Syndrome
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Howard's Way (2)Hello everyone, I hope you are all keeping well. This is the first time I have written my story only to sit and write it again, as I came across some more recent scientific developments. Last time I told you about the benefits of our American friends, the scientists who have managed to come up with something special in enabling us to produce our own children, albeit with a lot of help from medical specialists. Now I know I have said on many occasions that this day would come but it's still quite a surprise now that it's arrived; no more being told its impossible for you to produce children for the rest of your life. In the next few years, you might be able to produce enough live sperm to fertilise your partner's eggs. I know it is not simple at the moment, and will require treatment before any live sperm can be produced. There was some information about this in the last Newsletter. Basically it means a substance will be injected and after 11 weeks, a small amount of sperm removed to be examined under a microscope. Any live sperm will be removed and will be frozen until your partner is ready to receive it. At this point, the egg can be removed, fertilized, placed in an incubator for two days and then implanted. This is called the ICSI system. The rest of the live sperm can be frozen to be used at a later date. This method has been used for a number of years, but women with KS partners have had to use a sperm donor. This method has now been trialled in America with a group of men with KS, who had first been given the injections, with a 46% success rate. Most men with KS can produce fairy large amounts of what appears to be sperm but it's not of any use for producing children with. So with the new system in operation within a few years, there could be many fathers out there who have XXY for example but will still be able to father children. One of the general misconceptions seems to be that it is easy to conceive, but there are lots of people out there who wish they could have children and are unable to, and there are countless reasons why this happens. There have also been more recent developments in genetics, that open up the possibility of examining each gene and eliminating problems to start with. For many years I have been on the trail of the consultants to find out whether any research is possible to solve the problem of KS men not producing live sperm. This is something I first had a word about with the consultant urologist from Portugal in his consulting rooms. How 1 got there in the first place is another story. He explained things to me in a way I could understand, drawings were made and sketches produced and I was invited to one of the hospitals to see for myself. Each time I go to Portugal I call and see him: of course I make an appointment first. From here I started pondering, and the year I first went to Australia on holiday, I made it my business to go to Prince Charles Hospital in Brisbane. Here, further discussions took place. Each year I go to Australia I made a point in calling to see them and as a result found out many things about treatments that seemed better than ours. Some of the older treatments for example seemed to be made much simpler and less painful. As I mentioned before, scientists have recently succeeded in splitting the chromosome down to examine the various genes on each chromosome. This opens up the possibility of removing or modifying faulty genes and perhaps dealing with the root of some of our problems. Its surprising how easy you can make it sound on a computer. There will be countless hours-days-weeks-months-years before solutions are reached for us and all the other people born with a genetic condition of some sort or another. But we are on the way and if we had been born in later years, we might never have had to hear the word KLINEFELTER. Now for the reason I met the consultant in Portugal! I love swimming and also all water sports. I was away for a month so I taught swimming, and was in the pool every day, until I slipped on the steps and fell into the pool - yes the deep end as you would guess with me. I split my left elbow which caused a great deal of pain. I was told I needed private treatment straight away, so they took me further on up the coast and I went into see the consultant. This was at a private hospital because I had insurance. The consultant was tall, and he said to me "Have you got KS?" that was many years ago when it was all new to me. His normal post was Consultant Urologist at Lisbon, but he also helped in the cottage hospital they have on the Algarve. His knowledge and information has helped me a lot as well as answering a lot of quite awkward questions. I don't suppose many people are as nosey as I am, but knowledge can be good as well as bad and I always ask questions whenever I am in a strange hospital or meet new Doctors, even if It's abroad. All the best to you lot, especially the Over the hill Gang, that's them past 60. Please look after your own body as much as you can. Don't let doctors push you around, especially as I have often found, when you are over 60 years, you are sometimes treated as being of no further use to the country, and as though you are just using it to live off. You may have to bang the table with your fist if its the only way of getting through to some of them. All the best Howard. |
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All information on this site is correct to the best of our knowledge, however the KSA (UK) recommends that you verify all facts before acting upon them. Medical treatment and advice should always be confirmed by your GP, consultant or family doctor. Copyright ©Klinefelter's Syndrome Association UK |
