Focus Foundation

http://www.thefocusfoundation.org/FF/index.php

My name is Graeme and I am XXY. I was told today of your new Foundation and I have had a good look around your website and I can tell you I've not seen ANYWHERE a more pleasing website on matters to do with XXY children ever before. We XXY's are well overdue for something positive to be shown by a medical professional such as yourself. Far too often, and I even do it myself, we XXY's are described in not very positive ways. The literature available although often helpful usually links us to one disease or other that we DON'T have as children and are expected to have as adults, such as Klinefelter's syndrome for instance.

I have stated many times to XXY men that XXY is a state of being and all other things are treatable even to the point that they don't develop in the first place. I am frequently criticised by my XXY peers and are usaually not welcome in their discussion forums because of my outrageous views, that we are XXY and that's it.

I was told of your new Foundation by a person, a mother of an XY/XXY young man who has had many difficulties over the years with her son, which I can only hope will eventually sort themselves out. However her view was that this new Foundation's website was full of wishy washy stories for new parents of children with X&Y variations that bear no resemblence to the reality that will surely come their way. In short to make new parents feel better.

I have a different view, obviously. Unlike a great many XXY men I recognise I need the medical profession to help me in my life. Help which is much appreciated. I have a long lasting relationship with my Endocrinologist, a Dr John W Delahunt, at Wellington Public Hospital, Wellington New Zealand. In fact I dread the day I'll have to get used to a new Endocrinlogist as he is the only one I have ever had. I am 51 years old by the way, I was diagnosed in 1975, that's a long time ago.

However I could have been diagnosed when I was 4 and a half years old due to education/behaviour problems, and again when I was 12 when I had a medical examination that wasn't done properly. And again when I was 15 for teeth work, there is a conditon known As taurodontism associated with being XXY, which I did have but it wasn't picked up by the Orthodontist, even though the literature showing the possible link was available. And again when I got a rash infection possibly Shingles and the GP I went to asked "Is it down there?" and that was the excamination. And of course for all that time my education/behaviour problems just got worse and worse and it was always my fault. Therefore we can really do with, for the next generation, more effort from the medical profession, the people trained to find persons with X&Y variations. I hope your Foundation will have that effect on your profession.

I see you have a promotional video that I have downloaded and I would love to put it on my YouTube website which is titled "AllAboutKSand XXY" Can I get your permission? And a no will definitelty be taken badly as I want to do everything I can to help find and treat XXY boys especially. I want to do all I can to make sure no-one else has to live the rotten life I've had to live simply by not being diagnosed early enough, in my opinion.

Yours faithfully,

Graeme.
47XXY