Klinefelters Syndrome Association

The Klinefelter’s Syndrome Association (KSA) is a volunteer run organisation with a world-wide membership. We provide reliable information and host a helpline.
Free membership is offered to all interested health professionals – please visit the KSA at stand K20 or visit our website: www.ksa-uk.net.

Klinefelter’s Syndrome(KS/XXY) isn’t rare – but it is rarely diagnosed. Although it affects about 1:600 live ‘male’ births, only 25% are diagnosed and the intersex nature of XXY is rarely considered. Conditions considered less likely in males – breast cancer, auto-immune conditions, urinary tract infections, osteoporosis – as often missed.

KS/XXY can have a significant effect on the lives of those with the condition which extends well beyond infertility and the lack of testosterone. Mental health issues such as extreme social anxiety and depression are common.

Common symptoms in children are language and speech disorders, undescended testicle(s). They often present as ‘floppy’ babies. Adults have small firm testes, often gynaecomastia and are infertile. However, as sperm may be viable in younger adults, with appropriate help, some may be able to father a child. Early diagnosis and support can make a huge difference to quality of life.