All posts by Dan

How I feel

In the previous post I mentioned some of the physical attributes of Klinefelters Syndrome that I have been diagnosed with. There are also a number of psychological and social traits that are common. These are the ones that I have:

  • Lack of energy; due to the small amount of testosterone my body produces, I have a natural lack of energy in my daily life. I like my sleep / rest and I have often been told that I am laid back and easy going. I think this is due to the lack of energy – if I had more testosterone I’m sure I would be running around from A-B with a constant urge to be active.
  • Intelligence; I’ve read articles that suggest a person with 47xxy is a slow learner, and may have problems early on in life during school. As I look back on my younger years there was a point in my life where my class mates moved into the next year and I stayed behind with the younger kids. I’m not sure if this was a class-room space issue or that I learned at a slower pace than my peers. Most probably the later of the two as sometimes I found it difficult to concentrate. That being said in terms of grades I was average – in my GSCE’s I got one A, three B’s and 5 C’s and felt rather proud of that. Going on from there I did average at college and passed my A-Levels to get me into a decent University. I graduated in 2000 with a 2:1 honours degree in multimedia technology – I guess through my academic life I maintained a steady course. I have also read that some cases of the Klinefelters syndrome would suggest that IQ ranges are 10-15 points lower than someone without and on occasion are much higher. I remember doing an IQ test and scoring really highly – I think it has something to do with being left handed (not related) and have control over both sides of my brain. I also feel that I have some great mental powers, for example I’m good at remembering strings of numbers and phrases – in particular passwords. I know my credit / debit and bank information without needing to look at my cards. I also have about 50 or so password / email combinations stored – and have the ability to remember things as if I was watching a video or looking at a picture – a photographic memory of sorts.
  • Social Activity; At school I was never a fan of team sports, now in my 30’s I’m not your average male. I’m not interested at all in sports like Cricket, Golf, Boxing, Athletics or Football. Unlike some of my colleagues at work – football does not rule my life or my social calendar. Instead I fill my calendar with activities that I like to do and make me feel cheerful; playing video games, exploring the countryside with my girlfriend, going shopping and creative writing. Going back to the theme of being at school, I was never motivated to join a team or a club – probably because during PE sessions I would be often caught day dreaming at the side of the pitch or deliberatly running in the opposite direction so I didn’t have to take part. On the other hand I quite liked solo sports – Swimming was a favourite and during my school years I achieved many badges and awards. I also was a keen cyclist and rode my bike everywhere – recently through work I have joined our cycle scheme and got back into cycling – it’s a great way to exercise doing something I like to do – and not running in a gym surrounded my testosterone pumped guys – which for me is a very daunting experience.
  • Friends; I’ll be honest I don’t have many ‘man’ friends – this is probably due to the fact that I don’t like team sports so outside of work I probably don’t have anything to talk about that your typical man would discuss. I like music and have a very eclectic taste after working in the industry for over 5 years. I like Sci-Fi shows (Doctor Who, Stargate (I have even had a beer with Teal’c) V, Battlestar Galactica etc) and a bit of a film buff. I don’t really have anyone that I would pick-up the phone and have a chat with – feels a bit odd, and some of the people that I know would probably take the piss – so I generally avoid thinking about doing this. I remember when I was a college and at university a large percentage of my friends were female. I’m not sure if this has anything to do with having an exta ‘X’ chromosome – I would talk to my female friends for hours on the phone or down the pub and at the time thought it was very normal to do so.
  • Emotions; I’m a very sensitive / emotional person. If I’m watching something on the TV that has either a great or sad story I will generally shed a tear. I’m not ashamed of this – I actually embrace it, as it shows that men can have a softer side and it is accepted. I’m not saying that I’m balling my eyes out – just the odd tear will appear from time to time. I think this is what has enabled me to be a creative type and write down my thoughts and feelings in the poetry that I write. I’ve watched people read what I have written and cry their eyes out. I’ve got a weird way of seeing something happen, capture the emotion and then write it down – so when someone reads it back they feel exactly what I saw and it triggers those emotions all over again.
  • Confidence; When I’m on my own and in control of a situation – I’m as confident as I need to be. When I’m with others and in particular colleagues, my confidence goes out of the window and sometimes I struggle to make sense. I’m not sure why this happens – I can only relate it to when I go for a pee, and someone comes in and pee’s next to me and then I can’t pee until they have gone – it’s that same kind of feeling. It’s very easy for people to misundertand who you are as a person when your confidence takes a holiday. I’m sure many people at work think that I’m quiet and shy and not confident – that’s not the case at all. It’s down to the people that surround you, in my group there are a lot of people who are naturally loud and naturally more hairy than me – so they stand out. If these people understood my condition, things might feel different for me and I would feel more confident when speaking to them and when present in a group. Someone once said that we all have the power inside of us, we just have to believe – I think this is true – however having the right (normal) dose of testosterone in your body to begin with helps even more.

It’s getting late, so I best go to bed as I like my sleep – something that I read is that people with Klinefelter’s Syndrome have problems getting up in the morning and starting their day. This is defintely true of me. I can stay up till 2-3am and not feel tired, however when the alarm goes off at 07.30am I just want to stay asleep. Normally go through 2-3 rounds of snooze alarms before I can pull myself out of the bed and get ready at a snails pace. As soon as the alarm goes off my girlfriend is bolt up-right in the bed and off downstairs for a shower – even with HRT (Hormone Replacement Therapy) I don’t think it will make me get up any quicker – however I’m looking forward to testing it out and seeing what results I get.

The start of something

I woke up one morning and wondered why there isn’t much information on the internet about the condition that I have recently been diagnosed with. If you look at anyone in the street – it’s hard to point a finger at someone and instantly know that they have Klinefelters Syndrome or 47XXY as there is nothing about the condition that makes you stand out from the crowds – so why is there hardly any information about it?

What is Klinefelters Syndrome?

Klinefelter syndrome, 47, XXY, or XXY syndrome is a condition in which human males have an extra X chromosome. While females have an XX chromosomal makeup, and males an XY, affected individuals have at least two X chromosomes and at least one Y chromosome. Because of the extra chromosome, individuals with the condition are usually referred to as “XXY Males”, or “47, XXY Males”.

Signs and Symptoms

Affected males are almost always effectively infertile, although advanced reproductive assistance is sometimes possible. Some degree of language learning impairment may be present, and neuropsychological testing often reveals deficits in executive functions.In adults, possible characteristics vary widely and include little to no signs of affectedness, a lanky, youthful build and facial appearance, or a rounded body type with some degree of gynecomastia (increased breast tissue). Gynecomastia is present to some extent in about a third of affected individuals, a slightly higher percentage than in the XY population. About 10% of XXY males have gynecomastia noticeable enough that they may choose to have cosmetic surgery.

After reading the above you can see why its not a condition that you would shout about.

I think differently – in terms of physical appearance. I’m lanky, I have a large wingspan (the doctor’s words – not mine), a youthful look (lack of body & facial hair), ability to gain weight only around the mid-section, problems with my teeth from an early age and after a years worth of tests and hospital visits it would appear that I am infertile.