The future

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

Much of the early literature about KS/XXY mentions the high proportion of KS/XXY males with low IQ or in the prison population. These old medical books often paint a very bleak picture. However it is now accepted that IQ is usually in the normal range. Some of our members are much higher!

While many with the condition do have some difficulty with learning, with appropriate support this often can be overcome.  Many of those who have KS/XXY may not even realise they have the condition  – 75% are never diagnosed.

To emphasise the achievements of some diagnosed XXY/KS folk, the KSA has created the poster What could I be?‘ The poster has received an excellent response from GPs, nurses and consultants at various medical exhibitions and conferences where the KSA has exhibited 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.

Benefits 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 many 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. Success rates are poor at present, but may improve. The procedure is more likely to be successful in younger adults. Fertility options