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What do men with KS/XXY want?

Posted , 3 users are following.

XXYGuy
XXYGuy

A participant has offered an opinion that there needs to be more research targeted to adults.  However I have read some reports where adults with KS were studied and the response from men with KS were all negative, as if doing the research was an insult to their senses.  

This is the title of a more recent report that didn't get a very favourable response from those XXY's (and others) commenting on it, there are even blogs about it

"Quality of life is reduced in patients with Klinefelter syndrome

on androgen replacement therapy"  

I even recall writing to the authors myself complaining about the title.  

However; upon reading it in total I found the report very interesting, a great read, for those who like to read research material.  So what do men treated to prevent the symptoms showing want, only reports that deal with children, or only reports that sugar coat important life facets? 

1 like, 3 replies

3 Replies

  • XXY
    XXY XXYGuy

    Posted

    I take you are aware of the different camps within the XXY community and so perhaps it should not come as that much of a surprise certain reactions to publicised research, where you should also understand where there is critiscism or indeed praise, what is, is not representative of all XXY's, where it could even be the vociferous are a minority or where a greater number may comprise of the club factor given how passive and easyily led XXY's can be.

    As to what I wish to see is more honest focus on adults as let's face it, it's adults that are supposed to be working and paying taxes so physicians can heal.

    • XXYGuy
      XXYGuy XXY

      Posted

      Im am aware that the online population is a fraction of the over all population and what the online people say, (and there's no evidence most of them are XXY at all), is not often verified in published reports.

      I am aware men with KS  should not be given self assessment questionaires as they are rarely capable of reporting their own circumstances accurately.  

      That particular study I quote is flawed in ways most cannot imagine, I expect, since most do not have my perspective.  Firstly, and to my mind MOST importantly, the men in this study were comp0ared to men who do not have a chronic disease, a totally unfair comparison. Secondly, who says we take testosterone to improve our Quality of Life?  I maintain XXY males diagnosed in adulthood or teenage years will most likely have a myriad of problems that just 1 therapy cannot and was never intened to cure or manage.

      So I think the study on that particular group of XXY men was overall very good, for them, the participants, but is of little value to anybody else.

  • XXYGuy
    XXYGuy

    Posted

    When I was first diagnosed with Klinefelters' syndrome in 1976 and I read the standard information, I wondered "where are all these guys, this 1:500 to 1:1000 males?"

    Why is there no research in New Zealand?

    How is my treatment determined?

    The first answer is "They're everywhere"

    The second answer is, "Our population is too small to have research."

    The third answer is "My happiness determines my therapy (provided my happiness can be confined to the normal deviations of XY males).

    Later, much later, I changed that regime to be "My happiness is determined by my wishes."     

    So I want every person with SCA discovered at birth.  Other small countries can do it, we can too.  Everybody should be allowed the same chance in life of success.  Treasury at this d time disagrees, they determine New Zealand does not have the infrastructure to care for all those people.  But they're here right now, undiscovered, possibly needing help and not knowing it.  If anybody else develops a disease later in life, they're helped.  Because most of those with SCA's look normal, they're ignored.

    If only we had some obvious physical abnormality at birth, we'd not be able to be ignored. 

     

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