Subject: Eponym: Klinefelter's syndrome - Lancet 2000; 356: 333-335; Amory JK et al

Sir,

A PATIENT'S PERSPECTIVE OF KLINEFELTER'S SYNDROME

I was sent a copy of this article by Dr. Alison Wright, a physician who is currently working in Sheffield. She was one of the first people I spoke to after I was diagnosed as having Klinefelter's syndrome (KS), therefore she has an understanding of my insatiable desire to learn all I can about KS.

The article was very interesting and I could identify with some of the symptoms present.

My KS was discovered in May of 1998 and I am sure you all remember the early days of Viagra being available to the public. I asked my doctor for some. This time my doctor listened to my sorry tale of still being a virgin at age 47. The last time I asked for help in 1981 my former doctor told me to find a prostitute. I tried unsuccessfully to explain that my new partner and I were having problems but to no avail. As a result of this I changed my doctor and practice.

If I had known why we were unable to have sex and the fact that I was sterile then we could have adopted or tried to adopt, but we never went down this path because the embarrassment of trying to explain the situation was too painful to contemplate. Indeed, my wife as she became, could have undergone donor insemination.

We also went to the local NHS hospital and the British Pregnancy Advisory Service who again looked at my wife. At no time was I examined or asked to have a sperm count. They gave us a self-insemination kit which I have to this day (unused).

After I was diagnosed, fortunately for me, a friend found on the internet, the Klinefelter Organisation (KO), formerly the KSCUK, which I joined. Since then I have spoken to 3 other people who have similar symptoms. These represent a third of the total number of people I have had contact with. Personally my understanding and current feeling of wellbeing was greatly assisted by spending a week with 2 other KS'ers.

The KO is a self-help group of people who are prepared to talk about KS to professional and other people. Their website is located at www.klinefelter.org.uk

It took me a year to get Viagra and in the fullness of time it will be of some use.

Arnold
(47,XXY)
Contact the author at info@klinefelter.org.uk.