Hello, and welcome to Project 47XXY aiming to raise awareness about a condition
known as Klinefelter’s Syndrome or 47XXY.
In October 2010 at the age of 31 years old I was diagnosed with this condition following fertility tests. The outcome is that like many others with this condition I am infertile and dealing with the day to day implications of this condition. Recently I have started to take hormone replacement therapy in the form of Testosterone gel (Tostran) and seeing a big improvement on my life which has inspired me to create this project to help others like me.
About Klinefelter's Syndrome
1 in 650 live male births are said to be found with this condition and is the presence of one or more extra chromosomes. Males usually have one X and one Y chromosome (XY) and females have two X chromosomes (XX) Klinefelter's Syndrome is characterised by the presense of an additional chromosome (XXY)
Klinefelter's Syndrome is usually discovered by a blood test which identifies the number, size and shape of the chromosomes.
The most common symptoms include:
(taken from www.ksa-uk.net)
- Speech and language development disorders
- Short attention span, easily distracted
- Lack of agility and dislike of physical games, especially team games
- Passive, shy
- Difficulty with self expression
- Tall stature with disproportionally long legs and arms (euneuchoidism)
- Moderate learning difficulties
- Tiredness or lethargy for no apparent reason
- Low sex drive/libido
- Poor upper body strength
- Small testes
- Low self-esteem
- Absence of, or sparse body/facial hair
- Gynaecomastia (breast development)
- Difficulty remembering recent conversations
- Poor communication and social skills
I would like to use your donations to create a global online resource that is free and open to all and serves as an information repository and a place where individuals can come together to share their experiences.
The website will be part of a global project to raise awareness about Klinefelter's Syndrome & provide support to the individuals affected & the lives of those with whom the individuals come into contact with.
Your contributions will help me to set-up the project as a non-profit organisation and will fund the initial development of the website. In addition to this it will help create literature that can be sent to local governments, health organisations, pharmaceutical companies and charities alike.
If you cannot financially contribute there are other ways in which you can help:
- talk about this project
- share the project using the links above
- pledge support in help building out the online infrastructure
- volunteering at events
I have been writing a blog about the condition ever since I was diagnosed and
it can be found here: http://www.47xxy.me
Thanks for all your help & support.