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With this being such a common disorder people often times wonder how it is that men live full lives never knowing they have it or being diagnosed later in life. This mother offers an explanation.
A person was wondering why people wait so long before they are diagnosed. Our son (age 26, 47XXY) was diagnosed exactly 1 year ago.
If you don't know that something exists (KS), it is impossible to know you have it!! Now that we know about KS, it explains many of my son's traits that we just chalked up to ----"That just him".
He was perfect, passive, everyone liked him, non-trouble making child/teen/adult. So what's so wrong about that? His parents were just like that too!! (our justification);
So he didn't get a lot of hair at puberty. His dad isn't a hairy-type person either (our justification);
So he had trouble reading, spelling, comprehending. We just got him tutors (to no avail). He had a horrible, traumatic birth, (our justification);
So he is taller than his mom and dad. We just said "You should see the milkman" and laughed..(the only way we could justify that one).
And on and on.
It was not until he had a urinary tract infection last September that his Internist found his testes to be extremely small. (I am not a testes expert -- he is an only child & his pediatrician never remarked about them.) He was referred to a Urologist who in turn referred him to an Endo. It is the Endo who first mentioned the words, KS.
So, in our case, we didn't know about KS & nothing "abnormal" was noticeable. If you don't know something is broken, why fix it? He is/was just a normal person -- what is there to diagnose if no one knows there is a problem? My son has an Associates Degree from a top university, has been married for over two years, has a great personality, has tons of friends -- HE JUST HAS AN EXTRA "X" CHROMOSOME IN HIS MAKE-UP & WILL NEVER BE ABLE TO FATHER A CHILD. It could be worse!!
Sorry I have gone on for so long but this just hut me in a funny way. I do wish we had known about KS when he was growing up as it would have answered a lot of our questions that we just justified as "that's the way God made him".
It's not why did we wait so long to get a diagnosis -- it's we had no idea there was a problem in his genetic make-up & we had never heard of KS.
