Unfortunately KS/XXY is often diagnosed late in life (at over 35 years of age) when much of the damage in terms of physical, mental and social health has been done. As a result many may have had little support or understanding and may suffer from osteoporosis, obesity, diabetes, extreme tiredness or lethargy, depression, gynaecomastia (breast development), mood swings and mental health conditions.
However, not ALL suffer from ALL these symptoms.
Nor do ALL suffer extremes.
Symptoms occur often………..but not always.
Many adults who were diagnosed later in life said that KS/XXY had little effect on them – other than infertility. Each case of KS/XXY needs to be individually assessed. For example, some of our members are affected by osteoporosis in their 30s while others are active sportsmen, some have essential tremor while others do not, some have diabetes while others do not. Early diagnosis, a healthy lifestyle and appropriate treatment can make a huge difference!
Currently about 75% are never diagnosed and many are diagnosed later in life.
16% were diagnosed when they were under 10 years old
11% between the ages of 11 and 17 years of age
29% when they were a young adult between the ages of 18 – 28 years
39% when they were between 29 and 55 years of age
Why are diagnosis rates so poor?
Some health care professionals suggest that diagnosis rates are so poor because symptoms vary so much making KS/XXY difficult to identify. Others suggest that the majority of those with the condition do not experience problems of sufficient severity to warrant seeking help or advice.
Certainly the symptoms displayed do vary from person to person but the KSA, from years of experience of dealing with the ‘victims’ of late diagnosis, urges GPs to be more aware of the relatively high incidence of KS/XXY and the importance of an early diagnosis.
Some symptoms are of an intimate nature which can make discussion with others, even doctors, extremely daunting as well as causing possible psychological trauma and withdrawal from society.
Often when someone does manage to build up enough courage to voice their concerns, they find that their GP just dismisses them. Even if the GP does recognise that something is amiss and arranges tests which result in a diagnosis the correct support and treatment are sometimes not offered.