An Introduction for Parents
If you have just received a diagnosis of KS for your child or unborn baby you have come to the right place for reliable information and friendly support.
The most important thing to remember is that KS has a very wide range of effects, the severity of which varies considerably from person to person. Many of our members are successful in their chosen fields of employment and in their personal relationship but others struggled at school, find it difficult to maintain relationships and may need some level of support throughout their lives. However we do know that early diagnosis and appropriate support can make a huge difference, so your child is one of the lucky ones!
If you would like to read the story of one KS child please click here. There are many more stories in the Members Only section of the website.
If you would like to talk to someone please call our Helpline: 0300 111 47 48. Please remember that, as the KSA is run entirely by volunteers, sometimes there may not be anyone available to take your call. Please leave a message with your email address or phone number (landline, if possible) and we will get back to you.
Klinefelter’s Syndrome (KS) is a common congenital condition which is found in around 1 in 600 live male births and is caused by the presence of one or more additional sex chromosomes. Chromosomes are genetic material. Males typically have one X and one Y chromosome (XY) and females have two X chromosomes (XX). Klinefelter’s Syndrome is characterised by the presence of an additional chromosome (XXY).
KS is diagnosed by a genetic blood test which identifies any abnormalities in the karyotype i.e. the number, size and shape of the chromosomes.
It is not life threatening. It wasn’t caused by anything you did and it is not inherited.
It is thought that 50% of XXY foetuses are miscarried, so your child is a fighter!
In 2011, Dr. Pat Jacobs reported: ‘… a startling rise of 60 per cent since the 1960s in babies with Klinefelter syndrome.’ The reason for this is not known but it may be linked to the general, and well-publicised, fall in sperm count and the rise of the number of abnormal sperm.
This is the most common effect and is seen in most youngsters. Language often is delayed and they are likely to have some difficulty with receptive language – understanding verbal information. The child may also have difficulty with articulation – forming the required sounds. Speech therapy can make a huge difference and should be implemented as early as possible especially as delayed language will have a detrimental effect on education and social interaction.
Most youngsters will be taller than would be expected. Their legs – and possibly arms – will be somewhat longer than usual. Many KS adults are over 6 feet tall but few are unusually tall. Some may not be unusually tall particularly if their parents are quite short.
Although most KS youngsters have an IQ in the normal range most do have learning difficulties. These are usually associated with difficulty processing information particularly if it is presented verbally.
It will help your child if you write things down. Keep instructions and sentences simple.
Visual aids are very effective as these children often have enhanced visual skills – use of colour is particularly useful.
Support at school can help your child to reach their potential.
Often KS children – and adults – find it very difficult to concentrate. Their short term memory is likely to be poor and they can be susceptible to noise. It is little wonder that they can appear to be lazy and stupid when in fact they are likely to be as bright as their peers but have to work twice as hard just to keep up.
Limiting distractions and breaking work down into manageable chunks can help.
Many KS babies have some degree of decreased muscle tone or floppiness which may require physiotherapy. As they get older most youngsters are not very coordinated and their long limbs can be more of a hindrance than a help! Most do not enjoy team games and can find it difficult to understand the rules. Often they dislike the physicality. However many are good swimmers or cyclists.
Undescended testicle(s) are common. Usually doctors will recommend a small operation to bring them down and stitch them in place because otherwise there is an increased risk of them becoming cancerous.
Some boys may have a smaller than average penis.
Because of their poor expressive language skills they often have difficulty putting their thoughts, ideas and emotions into words. This can lead to considerable frustration. Always allow your child time to gather thoughts together – and to take in what has been said. People with KS are likely to have a reflective approach to learning – they need time to process the information.
As language is essential for building and maintaining social relationships the KS child may find it difficult to learn appropriate social behaviour. Many have autistic tendencies, finding it difficult to interpret social cues such as facial expressions and they do not notice miss nuances of behaviour. Literal interpretation of language can also cause difficulties. Professional intervention can help considerably.
KS children are usually less mature than their peers emotionally and socially. However they do continue to mature for longer. They are also likely to look younger than their peers – an attribute they may appreciate more when they are older!
Next… KS or XXY