Posted , 9 users are following.
I was diagnosed with KS at 49. With the exception of 1 person I do not have any problems discussing my KS with anyone - I am not embarrassed by it.
Do others who have KS have the same open minded opionion as me or do you shy away from talking about your KS?
1 like, 33 replies
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neilduncan09099 AshLaw
Posted
Hey AshLaw,
I admire your courage to be so open minded about something which in probably most peoples cases, is to personal to discuss with "everyone."
I myself am pretty much convinced I have this disorder and I show all the most common symptoms. The problem is I am yet to find a DR who actually has any knowledge of this disorder. I am determined though and won't give up until such a time arises.
I'm the opposite of you, in terms of being open minded, I shy away and try to avoid scenarios where I will have to expose myself physically and I am ashamed of my lack of facial hair for a young man of 25. This definetely makes me shy away from a lot of social confrontation. The truth is deep down I don't actually see how it even matters and I'd like to think that most mature people would feel the same way, but I suppose that's my problem. I'm not sure how people would react if I came forward and told them I had this disorder.
XXYGuy neilduncan09099
Posted
There's a fellow called Sir Cliff Richard, he didn't shave for a very long time, yet managed to make an excellent career. I think he never married, do you ever wonder if he's XXY?
neilduncan09099 XXYGuy
Posted
I have no idea, but it's possible. Maybe he does?
Arma1975 AshLaw
Posted
My son is 21 months old and has klinefelters and I'm struggling to to find anyone who knows about klinefelters even his Docter and health visitor don't know much about it though other than it effects puberty which is wrong I can see with my own eyes it effecting his speech now I have tried telling my sons mother about my concerns but she not interested as she still holds a grudge againstme I can't find no support locally but I have come across here so here's hoping for the best
Pip999 Arma1975
Posted
Hi as ur son been tested for kids then,I found out when I was 38yrs old.it doesn't really effect ur speech but can effect ur learning of every day stuff I didn't really learn to read and write proper till I was in late secondary school if u what to now more just ask I'm phil
AshLaw Arma1975
Posted
Pip999 AshLaw
Posted
Hi ash I'm in the U.K.
AshLaw Pip999
Posted
I have also found (as with many things in life) that its better to have a multitude of specialists that are specialised in one thing that when combined come together to explain KS.
I have an excellent Endo who diagnosed my KS; who defines what dose of T I require and when; I have an excellent doctor who administers the T dose and also sits and talks about my KS, my levels, etc., but is also willing to join KS UK as a practitioner to understand me more; and the best specialist is YOU!!!
Because only you can research KS; only you knows what is good for you or yours and only you can fight for what you want, require, need when it comes to your KS.
XXYGuy Arma1975
Posted
Arma1975 AshLaw
Posted
I'm in the UK
Arma1975 XXYGuy
Posted
I would like to know if anyone had speech and language problems at an early age as my boy says no more than 7 words I can see he gets frustrated as he can't say what he wants he points a lot
XXYGuy Arma1975
Posted
And all I can tell you is that speech and language problems are associated with XXY, and you need to take your son to a language therapist. My parents are dead, I can't ask them, and I don't recall anything from so long ago.
In any event, it doesn't matter what XXY men can remember, all that does matter is getting therapy for your son.
Arma1975 XXYGuy
Posted
john75639 Arma1975
Posted
If you live in the US, you can find support groups at the National Institute of Health website . I usually use medlineplus.for information on xxy.
Another is genetic.org. Or some Children's Hospital 's have. information on xxy. You have to ask if they have information on the syndrome., in Aurora Colorado they have a clinic.for xxy, xxy, xyy (boys) and xxx children (girls)
called eXtraordinary. clinic.
There are support groups in other countries too., besides the US.
Hope my information helps you get current views on xxy children
Arma1975 AshLaw
Posted
I'm in the UK I have been in contact wilth KSA ORG & KSA UK my son was diagnosed in his mother's womb. I'm struggling to find more information other than these groups as my both my sons Docter & health visitor don't know much about klinefelters. I'm waiting to here back from speech and language therapist as I can see with my own eyes my sons speech is not improving & best thing about it is my sons mother is not bothered I can't even discuss this with her as she threatens me with the police. I also believe as my son has 3 older half siblings his speech should be way better than what it is
john75639 Arma1975
Posted
I live in the US. The organization is called AXYS or genetic.organization
It can you you information on xxy, xyy or xxyy, ox xxx.
I don't remember mych about my childhood but relatives have told me I spoke about 10 words when I was about 4 years old and then I stopped talking untIL the age of 6 yrs old. Apparently I told them I was a sissy, they laughed and that why I stopped talking. I don't remember any. such incident.
Even today, I don't talk much. I get very anxious if I have to speak to strangers. As a young child, I was extremely shy around people and classmates. I was never good at sports and didn't know how to make friends. In high school, I was too clumsy. In one gym class, I was pinned to the floor in a wrestling match in 2 seconds I suspected that I had no muscles because I couldn't even do a push up during gym class. I felt I was a weakling and I didn't
know how to communicate to others. Years later, I found out with no testosterone, I had no muscle tone. In college, I couldn't makeep friends because I was too afraid to talk to anyone.
I was better at American Sign Language, even thought I am a hearing and speaking person.
I had no speach therapist, no professional to help with my problems. Today, I have short term memory. I won't know what I wrote on the forum tomorrow. Unless I read it again.
Every child should get professional help.Social skills must be addressed. Delayed speech must be addressed, otherwise slow development skills will occur and delay the child's mental status.
I hope you get the help the child needs..Ignore anyone who doesn't seem to care about your child's welfare or growth in becoming the best young adult in the future.
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