Working to raise awareness of Klinefelter's Syndrome

and to provide help and advice to all those affected


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One of the clearest explanations of Intersex is provided by the Organisation Intersex International, which states:


"Intersex is congenital differences in anatomical sex. That is differences in reproductive parts like testicles, penis, vulva, clitoris, ovaries and so on. Intersex is also physical differences in secondary sexual characteristics such as, muscle mass, hair distribution, breast development and stature. Intersex can include things that are invisible to the eye such as chromosomal and hormonal differences."


Those considered intersex have physical differences that confuse medicine’s anatomical ideal of male and female. People do not have to call themselves intersex simply because they are thought to be so by others. Intersex is about sex differences and not about gender roles. 


 Their website goes on to explain what intersex is not under the headings of:  

  • It is not about sexual orientation
  • It is not about gender or gender identity
  • It is not an identity issue
  • It is not a medical condition, disorder or disability or pathology or a condition of any sort.

For more detailed information visit 



  What this means in relation to Klinefelter's Syndrome:


Current medical approaches concentrate on defining human beings as either male or female, man or woman, boy or girl. But it is generally accepted wisdom that for some human beings there is some overlap between male/female or female/male anatomies. To categorise these human beings as either male or female ignores those differences and can cause physical and emotional upset, late diagnosis, and/or inappropriate treatment.


Suppose a person diagnosed with KS is anatomically male and therefore is categorised as male, what health risks might they be liable to? Approximately 40%-50% of those diagnosed with KS will develop gynaecomastia - female type breast development. A 46XY male's risk of getting breast cancer is very low, but for an affected 47XXY person the risk increases 50 fold to be the same as that of a 46XX woman. As in the UK there is no provision for monitoring men for breast cancer, the risk of someone diagnosed with KS developing breast cancer is being ignored. If it was accepted that KS was an Intersex condition then checks could be put in place to ensure proper monitoring to reduce the risks.


Another example is weight - assuming that a person diagnosed with KS is anatomically male, although it is repeatedly reported that KS persons display female weight distribution, ignores the fact that weight control diets that work for 46XY males might not be appropriate for the 47XXY person. By accepting that a person diagnosed as 47XXY is Intersex then maybe a 46XX diet would be prescribed and be more successful? Or maybe they need a diet tailored to their specific needs?


Late diagnosis of KS is commonplace. A major risk of long term low or zero testosterone is the increased risk of osteoporosis (brittle bones). If someone diagnosed with KS considered themselves to be female and presented themselves to the public as female then a health care professionals would be more likely to assume osteoporosis could exist because females tend to suffer more from osteoporosis then males. For those diagnosed with KS who are categorised as male but who opt not to use testosterone replacement therapy, health care professionals might not make the link that they were at risk of developing osteoporosis. If KS was accepted as Intersex these problems should be avoided.



It is usually assumed that those diagnosed with KS are male because they have a Y sex chromosome - the problem is assumed to be the extra X sex chromosome. Treatments to address this 'difference' may require surgery and testosterone replacement therapy. However, there have been cases where people diagnosed with KS are female - a case of having an extra Y sex chromosome rather having an extra X sex chromosome. In one such instance (ref: a woman diagnosed with KS gave birth to three children.  



It was reported in the UK National Press recently that GPs were suggesting that all new born babies be tested at birth to identify future health care needs. Such an approach could result in all future cases of Klinefelter's Syndrome being diagnosed from birth. Hopefully, at the same time, greater consideration will be given to the sometimes arbitrary assignation of gender thus avoiding the possible consequences of misdirected drugs, treatments and counselling.



However, there is also a more disconcerting aspect involved here. For babies born without a clearly defined sex anatomy often the health care professionals will make a decision regarding the sex of the baby. This will frequently involve cosmetic surgery and/ or hormone treatment. Intersex organisations are fighting to prevent these decisions being made until the child reaches an age where they are capable of making their own decision as to whether they want to be male, female, male and female, or no gender. 


  Useful websites:

For more detailed information on intersex please check out the following websites:


The XXY Brain Trust:




What could I be?

Full size imageNewsletter-Autumn-2012

KSA Activity Weekend 2014

You are too late for the  2015 SPRING Activity Weekend which was a huge success so book soon for the next one!

The Next Activity Weekend is the 18th to 20th September 2015.

Extra special rates for families who have never attended one of these hugely successful events!

Existing low rates for adults with KS.

To book or enquire about this fantastic opportunity to meet others with KS and have a great weekend at the same time please email:


Don't miss out - book early!!

Special 'Earlybird' price IF BOOKED BEFORE 8th August:

Cost: £80 for those with KS or under 19, £135 for other Members, £310 for Non-Members.

If booked later the costs rise to £90, £145 and £350 respectively.

Please book early as the weekends fill up fast!!

Contact me as soon as possible if you want further information or wish to book a place by phone on 01629 534402 or

There is more information about Activity Weekends under Read more... 

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2015 Annual Conference & AGM

When: 6th-7th June 2015
Venue: Derby
Cost:   £40 per day or £60 for both days! 


To celebrate our 25th anniversary, the KSA are delighted to announce that Conference 2015 will be bigger and better than ever before!

For the first time the Conference will run for 2 days!!  Following the success of the psychology workshops this year, Saturday will be a dedicated Psychology Day plus a short AGM. On Sunday will be Conference Day - giving everyone more time to talk, listen and learn.  Of course we will still hold the Friday Get-together and, in addition, we can have a super Saturday evening as well.

Conference dates: 5th June - Friday Night Get-together

                                6th June - Psychology day and AGM

                                7th June - Conference day. Speakers include renowned endocrinologist, Richard Quinton.

  For further information and booking form please contact





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