Common Symptoms – Adults
KS is a spectrum condition – the severity and number of symptoms varies considerably from person to person.
The following symptoms may occur
often…but not always!
Infertility is the most common symptom of KS and many men are diagnosed following infertility investigations. The vast majority are unable to father children normally because of testicular failure. However, it is now thought that there may initially be viable sperm but that these die off. With recent advances in fertility treatment it may be possible to locate and extract viable sperm surgically from the testes. This sperm could be frozen and stored for later use. However, at present success rates are still low, even for younger men.
The testes usually do not increase much in size at puberty and sometimes they can be quite firm.
The penis can be small.
Most KS adults are tall compared to their families, but this does not mean that all are very tall! If family members are generally on the short side then the KS person may be of average height – which would be tall compared to the rest of the family.
Generally the legs and arms are long, and the trunk shorter than is usual.
Generally those with KS do not develop much muscle after puberty. Upper body strength seems to be particularly affected. Regular exercise such as swimming may help to improve this.
Between one third and a half of children with KS will develop enlarged breasts during puberty. This may subside but often it does not. If it is causing distress the extra tissue can be removed surgically. It is advised that a plastic surgeon who has expertise in this area should carry out this procedure in preference to a general surgeon.
KS adults who do not use testosterone often have little facial and body hair.
Pubic hair has a more feminine distribution pattern.
In common with most KS symptoms, this isn’t always the case. Some males can have excessive body hair!
It has been recognised that particular areas of the brain may develop differently in a KS person and that could be why short term memory can be poor.
Language development disorders are the most common symptom seen in children with KS. This is an invisible disability which is still very common in adults, although many will have developed coping strategies.
As language is essential for social interaction, many struggle in social situations. There is often difficulty in understanding the nuances of social behaviour as well as the nuances of language. Literal interpretation of language can cause difficulties.
There is often a difficulty with self-expression – especially when under pressure.
Many of our members report that they feel more comfortable in the company of women perhaps because the latter are more empathetic.
There is often difficulty in processing information – especially if given verbally. As short term memory can also be poor, by the time the second instruction has been understood, the first one may have been forgotten.
Written information and instructions are helpful. Extra time should be allowed for the processing of information. It is very important to give time for reflection – excessive pressure will make a situation worse.
Many people who have KS suffer from sudden, apparently random bouts of extreme tiredness. Certainly many use a great deal of energy coping with their poor information processing skills and some also use up a great deal of nervous energy. This tiredness can cause problems in the work place as some may be unable to work full days or a full week.
Testosterone treatment can help but does not seem to cure this problem.
Possible brain differences may be the cause of problems with concentration. In addition, those with KS often have enhanced sensory perception and this may affect concentration. Sometimes particularly acute hearing can make general noise and bustle very distracting. Others may be very aware of touch and find chafing clothing labels or texture are an added distraction.
Language and information processing problems may cause difficulty in understanding rules while poor coordination may impair performance. In addition, the use of communal changing rooms may be disliked as physical differences are on view.
However many do well at individual sports such as swimming and cycling.
Dyspraxia, is a common disorder affecting coordination in children and adults. It can also affect planning, organising and carrying out movements in the right order in everyday situations. Dyspraxia can also affect speech, perception and thought. Difficulties with memory and processing are common.
Handwriting and general dexterity is often affected.
Given some of the possible symptoms of KS, it is perhaps not surprising that many of those with the condition are shy and lacking in self esteem. However many do overcome this, especially with support from family and friends. Testosterone replacement therapy can increase assertiveness.
Libido is often affected because the production of testosterone is poor . Testosterone replacement therapy will usually increase sex drive.