Gok’s charity of the month – March: Klinefelter’s Syndrome Association (KSA)

Posted on February 28th, 2012 in Charities | 11 comments »

Hello my lovelies,

Where do i start with KSA? This is such an important charity for so many reasons. I had never even heard of Klinefelter’s Syndrome before I worked on my show Gok’s Teens; The Naked Truth where I met the incredible Jake, and we were all so lucky to hear his story! Jake’s condition has caused him to be very tall from a young age and I wanted to show him that he is just a normal teenager and that he can use his differences to his advantage! I really think he has turned a corner now and he is the most wonderful guy! But he is not alone, with Klinefelter’s Syndrome affecting 1 in every 650 male births, more kids, teens and adults out there need support and advice too! This is exactly what the Klinefelter’s Syndrome Association does, so please read on and try and support them in any way you can.

Loads of love,

Auntie Gok

xxx

The Klinefelter’s Syndrome Association (KSA) is a small national charity with big aspirations and international influence. It offers support and information to all affected by, or having an interest in, Klinefelter’s Syndrome (KS). The charity is run entirely by volunteers.

Klinefelter’s Syndrome is a genetic condition caused by the presence of an extra chromosome. Symptoms are variable but poor language development, increased height and weight, poor social skills and low self-esteem are common.
The KSA is working to raise the profile of the condition generally but within the medical profession in particular. Early diagnosis and a good understanding of the implications of the condition can make life much easier for both the person with the condition and those with whom they have close contact. Some GPs, however, have only a limited knowledge of the symptoms and implications of the syndrome and of the various treatment options available. Representatives of the KSA attend medical conferences to meet doctors and specialists in person in order to raise awareness.

Often those affected by KS have never met anyone else with the condition and feel very isolated. We provide the opportunity for members to meet at our annual conference, informal gatherings across the country and during our Activity Weekend which is held annually in April. In addition, we host an internet chat forum, XXYTalk.com, which attracts members from around the world.

The KSA has a great wealth of knowledge provided not only by the many medical experts who advise us, but also by our members, especially the older ones who are acknowledged experts on the condition. The information which the KSA provides via its publications, websites and helpline, will be of benefit to any professionals, individuals or families affected by, or interested in, the condition.

As many of our members are unwilling to be identified with KS it is difficult for us to raise the profile of KS or to fundraise. We would like to thank Jake very much for supporting us by nominating the KSA as Gok’s Charity of the Month.
If you want to know more about Klinefelter’s Syndrome, or if you would like to support us in our work, please visit our main website: www.ksa-uk.net where you can read our literature, join the Association or make a donation.

Support our sponsorship events http://www.justgiving.com/klinefelters

Like us on Facebook at:
http://www.facebook.com/pages/Klinefelters-Syndrome-Association/157794747621710

Or call us on our Help line: 0845 230 0047

11 Comments on “ Gok’s charity of the month – March: Klinefelter’s Syndrome Association (KSA) ”

  • fangs of fury on March 2nd, 2012 at 1:05 am

    I have klinefelters. I just sat for about an hour and wrote down the way I felt then I just deleted it. still no help

  • Alison on March 2nd, 2012 at 6:10 pm

    Fangs of fury -

    There is help available – you aren’t alone. Please contact the KSA by email chair@ksa-uk.co.uk.

  • Selena on March 2nd, 2012 at 6:11 pm

    To fangs of fury – You can get help and advice from people with KS – go to XXYTalk.com – its a free site and the members are very helpful and talking to others who understand will hopefully make you feel a bit better.

  • Chris Jones on March 3rd, 2012 at 7:12 pm

    I found I was 47 XXY in June of 2011 and oddly though some will understand this I was pleased to be diagnosed with it even though it took our crappy medical proffesion 14 years to do so.

    Let me explain further, in 1997 I had my left testicle dropped because it hadnt done so naturally, numerour doctors and nurses had seen and felt my testes prior to this operation and of course the surgeon that did the operation would have seen their actual size ie about 5mm. Nothing was said to me at that time about them being small. Six years later I went for for fertility checks, they obviously has my medical record and I was subjected to numerous checks with the end result being I was infertile, Once again no connection made.

    On numerous other occasion’s before and after these examinasions and surgery I had spoken to many doctors about other problems I have had all my life ie very bad memory, extreme tiredness all the time, low libido and I was always fobbed off saying its normal, go to bed earlier etc etc

    Finally I went to my doctors with my current partner around May of 2010 and was alot more forcefull that I needed to be checked out as after extensive reseach between myself and my partner suggested I may have adhd or some other condition, with her help forcing the issue with the doctor he ran about 10 blood tests over a period of 6 months and finally cme back with below average testosterone levels (average of what if they dont test anyone ? that I guess I will never know). My doctor then initially put me testogel 5% and set me up an an appointment with a Urology specialist whom I had to wait 3 months to see, 3 moths later I see the uroligst and after the usual extremly long wait in the waiting room he tells us “not his department” and he had referred us to a endocrynoligist (some one should tell the nhs how to write a bloody letter cos suffice to say wee were very annoyed at this).

    In June 2011 we saw a junior endo and he immediately spotted my small testes and went to get his superior, after a short discussion they told me the suspected I had Kleinfelters syndrome (xxy) and took another blood test which took until sept 2011 to come back with the confrmation.

    Since that time I have seen the so called senior endo once and at that point we discovered we new more about xxy than he did, of the few questions we asked him he referred to wikipedia in front of us for answers, suffice to say this did not impress us at all and several expletives come to mind.

    According to the NHS XXY is found in between 500 and 1000 men however if all the men get the same run around I got I find their figure to be woefully low and their own interpretation of the syndrome way off base, small testes is the main indicator that I can agree with however we all have micro penis’s ? errr no, I know for a fact that I am above average, we all have man boobs ? err again no – I am a skinny runt, I only started to gain muscle and some weight when I went on to TRT (testosterone Replacement Therapy) another common failing says that people with xxy taking trt are at a higher risk of prostate cancer however this has never been proven and lets face it if testosterone caused prostate cancer 100% of “normal” men would get it.

    Personally I am very very angry at our medical proffesion which from my point of view has become sexist with research into male syndromes and cancers as very very few people are even aware that men can get breast cancer with XXY men being more susceptible to it.
    Why should I and others like me have to rely on the internet to try and find information and specialist endocryinologists that actually know what they are talking about ? It is extemely frustrating and at this point in time I still havent found an endo that understands what xxy is properly.

    To those of you with xxy that have read this don’t give up and don’t think your abnormal, your an X-man after all even hugh Jackman was only an actor at the end of the day your the real thing :) ie think positive about it, its way way better to know why you are why you are than to just know that somethings not right with you and not know why.

  • Chris Jones on March 5th, 2012 at 10:48 am

    Note for for my previous post which I missed and is kind of important to make the rest make more sense – I am 39 years old.

  • Alison on March 5th, 2012 at 8:36 pm

    Well, Chris – you will understand why the KSA is working so hard to raise awareness of KS especially amongst medics!
    I hope you have visited our website and and our chat forum XXYTalk and found them useful.
    Good luck.

    Alison
    KSA

  • Vanessa Charter on March 6th, 2012 at 4:02 pm

    My son was diagnosed with Klinefelter syndrome at 12yrs. He’s now 30yrs old and a successful young man who manages life well. This is partly due the to the very real and extremely helpful and informative support from the Klinefelter Association. It must have been in its infancy when I first contacted them and yet I received so much help.
    As a family we attended conferences and met others which was truly wonderful for both parents and our son.

    The Activity Weekend, provided by the Klinefelter Association helped my son to develop and try physical yet fun activities while socialising with others with KS. He now attends the weekends yearly to help others and has a great time catching up with friends made in the early years.

    Thank you Gok for making this small but hard working and helpful charity your Charity of the Month.
    Vanessa

  • Chris Jones on March 6th, 2012 at 9:15 pm

    Alison, I have been a member of xxytalk for over 6 months and I am sorry to say that despite a huge membership there are only a few people that talk on there, the most I have seen online is 7 and think 6 of them are american so have no knowledge of Doctors in the UK. 121 pages(ish) of members and only 3 people talking is essentially a dead forum.

    Also the site doesnt just cover XXY they cover intersex which puts alot of guys off, I get the distict impressions that most people that suffer from XXY feel as though poeple think they are gay or Bi, I am not a homophobe but for a lot of guys it stops them posting. If I have to I will create my own UK ONLY based forum for men with XXY only because I am sorry to say XXYtalk.com has been less than helpful.

    I am aware this is not something you want to hear but I felt that I had to say it.

  • Paul Dutton on March 7th, 2012 at 4:05 pm

    I am UK based and I look after the xxytalk site for the Klinefelter’s Syndrome Association.
    The xxytalk site must cover Intersex issues but there is a separate place on the site for this. I say must because many who are xxy see themselves as something other than strictly male and it is right that their views are discussed.
    The accepted incidence of the condition is around 1 in 650 live male births but the diagnosis rate is very low. There are probably over 45,000 xxy in the UK but most remain undiagnosed and the ones who know they have the condition show very little interest in forums like xxytalk, probably because they can have Klinefelter’s Syndrome Association membership and the chance to meet face to face and talk about strictly UK issues. Of course, it is also good to see how things are in other parts of the world too.

  • Tom on March 10th, 2012 at 10:29 am

    Hi,

    I’m 30 years old and a teacher in London. We caught the end of the show with Jake and I said to my other half ‘he’s got KS!’

    I found out 4 years ago and it knocked me for six. but turns out we are better than normal and the T therapy is what all the celebrities are paying for in the US (robbie williams), keeps you young!

    Last year I embarked on a boxing career too, so loved the show with your brother gok. Unfortunately our bones are not to good and my back went before my fight. Be good to get in touch with Jake if he wants, chuck me an email mate.

    Life is good as an x man, difficult at times, but so are lots of things.

    In 10 years time, you will still look 21, all your mates will be balding and slowing down.

    Good luck in your search for contentment.

    Peace

  • JAKE ON TELLY on March 12th, 2012 at 9:15 pm

    HI Tom pleace get in touch love to talk :)



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