My Understanding of XXY

Firstly to say XXY is a SPECTRUM


I have started my 'understanding of XXY' by deliberately highlighting that the condition is a spectrum as all too often this is either forgotten or ignored. How if affects an individual varies from person to person. From talking to different people I have yet to hear of a person who has exactly the same attributes as me. I am well aware that some people are more affected than I am.

Misinformation 

There is in my opinion an endless amount of misinformation when it comes to XXY. At every opportunity there is a continued focus on the perceived challenges that many of us face.

To find and learn about the condition from a reliable source please visit www.livingwithxxy.org I myself am a European advocate for this non-profit.


How common is XXY?

Every country has a slightly different take with the statistics of how many people are affected by the condition. The 'Living with XXY' foundation said that it is between 1 in 400 to 1 in 650 males. Taking these figures I go for a figure that's roughly in the middle which is 1 in 500.

XXY is often described as a "rare" genetic condition; this is inaccurate. XXY is the most common under-diagnosed genetic condition in the world to affect boys and men.

Lower Natural Testosterone

As mentioned in my story, testosterone is measured on a scale of zero to 30. When I learned that I was XXY my natural levels were between 11-13, whereas an XY man's natural levels are between 19-24.

Before I knew I was XXY I cycled the length of Ireland in 6 days a distance of 693km's in 2013. Then in 2016 I ran my first marathon all on testosterone levels that were at the very least a third less than an XY man's levels. 

Visual Based Learning

When I went to school I struggled in my studies. I found that to learn by simply reading didn't work for me. 

Take History for example when I went on a field trip to a Norman castle here in Ireland I was able to visualise what the castle looked like in the past as I was able to take the words that I heard and build a visual image of what we were learning about.

Until very recently I thought that everyone had this special ability.

Empathy

From learning about myself and talking to other XXY people I have learned that many of us have a lot of empathy for others.

I myself often will help out others as it's something that comes naturally to me.

Smaller Testicles

One way that can indicate if you are potentially an XXY person is to see how big your testicles are. Many of us have naturally smaller testicles than an XY man.

The extra X chromosome that we carry affects the development of the testicles which then in turn affects the development of testosterone.

Visual Thinkers

People who are XXY tend to be more at home in creative fields. Many people that I have talked to work with their hands and work in architecture, design, construction for example. My background is photography and video production.

Communication & Learning Difficulties

As visual learners and thinkers, sometimes XXY people can struggle to explain what they want to say through language. As we are visual thinkers, learning in traditional educational settings can be more challenging for us and some XXY people can struggle with dyslexia and other learning needs.

Height

A lot of people who are XXY are very tall. I myself am 6ft 3 in height.

Infertility

The overwhelming majority of people who are XXY struggle to conceive naturally.

At a glance

As mentioned XXY varies from person to person but many of us have some of these traits.

Traits MAY include:
  • Right brained people
  • Smaller testicles
  • Creative thinkers
  • Taller
  • Empathy
  • Photographic memory
  • Visual based learning
  • Communication and learning difficulties