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Discussing Klinefelter Syndrome

The Gradual Theory
This school of thought maintains that by the time he is 10 or 11 years old, the child can be told that his cells differ slightly from those of other people. Soon after, he can be filled in on the details: that the cell difference is due to an additional X chromosome, which is responsible for his undersized testes and any reading difficulties he might have. At this time, the child can be reassured that he does not have a disease and will not become sick. The child should also be told that some people may misunderstand this information and that he should exercise discretion in sharing it with others.
 
By about the age of 12, depending on the child's emotional maturity, he can be told that he will most probably be infertile (see Klinefelter Syndrome and Infertility). Parents should stress that neither the X chromosome nor the infertility associated with it mean that he is in any way less masculine than other males his age. The child's parents or his physician can explain that although he may not be able to make a baby, he can consider adopting one. Parents may also need to reassure an XXY boy that his small testes will in no way interfere with his ability to have a normal sex life.
 
Adherents of this school of thought believe that learning about possible infertility in such a gradual manner will be less of a shock than finding out about it all at once, late in the teen years.
 
The Waiting Theory
Other experts believe that holding back the information does not appear to do any harm. Instead, telling a boy with Klinefelter syndrome about his extra chromosome too early may have some unpleasant consequences. An 11- or 12-year-old, for example, may associate infertility with sexual disorders and other concepts he may not yet understand.
 
Moreover, children, when making friends, tend to share secrets. But childhood friendships may be fleeting, and early confidences are sometimes betrayed. A malicious or thoughtless child may tell all the neighborhood children that his former companion is a "freak" because he has an extra chromosome.
 
For this reason, the best time to reveal the information may be mid- to late adolescence, when a male with Klinefelter syndrome is old enough to understand his condition and is better able to decide with whom he wishes to share this knowledge.
 
A Dose of Reassurance for Parents of Picky Eaters

Living With Klinefelter Syndrome

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