Prognosis

The effects of KS/XXY are very variable. Many of our members have very successful careers as lawyers, medical professionals, teachers etc. However, others may need some support.

Much of the early literature about Klinefelter’s Syndrome (KS) mentions the high proportion of KS/XXY males in the prison population and low IQ. These old medical books often paint a rather bleak picture. However, it is now accepted that IQ is usually in the normal range – many of our members are much higher! Although many with the condition do have some learning difficulties, with appropriate support these often can be overcome.  Many of those who have KS/XXY may not even realise they have the condition as 75% are undiagnosed.

The KSA has created a poster ‘What could I be?’  to help raise awareness of the skills and achievements of a cross-section of our members. 

Some of our adult and family members have written about their lives. They have chosen to share their stories with you, so that you can see the challenges some of them have faced and the heights some have scaled.

We hope their stories will help to change the perception of the abilities of those with KS/XXY.

The Syndrome is a poem by our poet laureate, Nick. I think Nick manages to sum up the feelings of many KS/XXYs – especially those who were diagnosed late in life. Along with Liam’s Olympic and P’s story, it can be viewed by anyone,  but the other stories may be accessed by KSA members only.

Read the stories here.

Importance of early diagnosis

If diagnosed in childhood, appropriate support can ensure the child flourishes and reaches their potential.

Promotion of a healthy life style can help to avoid possible future health problems.

Although very few men will be able to father children without assistance, there are techniques already available by which sperm could be extracted from the testes. Although success rates are poor at present, they are likely to improve. The procedure is more likely to be successful in younger adults. 

There is now a greater awareness that KS/XXY is about much more than infertility and testosterone. Early diagnosis and appropriate support can make a huge difference. KS/XXY isn’t rare. It affects about 1 in 600 males. However, it is rarely diagnosed.  Please help us to change that. 

Please view the KSA publication: Klinefelter’s Syndrome and Fertility by Kevin McEleny, consultant urologist and head of department at Newcastle Fertility Centre.