A guide of links of information that has helped me to understand the condition. I have cherry picked the best ones & hopefully these will help you, whether you are someone with the condition or a parent looking for information.
A project that I have set-up to raise awareness of the issues and implications of individuals diagnosed with Klinefelter’s Syndrome. Any contributions & help supporting this cause are appreciated!
Project 47XXY on Twitter
This is a PDF book, and very lengthy but well worth the read. I downloaded it to my iPad to read on the move. Covers all the questions you might want to ask when you go back to the hospital. When I was at the hospital they gave me this really odd leaflet with a man with a tight fitting blue t-shirt and bright red shorts, socks and sandals. I’m sure the guy on the picture has nothing to do with the condition – it did put me off. I think the health service should get Iain on the books and hand out this instead.
The KS Story – You Are Not Alone! – Iain McKinlay
Founded in 1990 and achieved Registered Charity status in 1996. It exists to support all those affected by the condition. I was given a sign-up form for this association – I haven’t joined yet – still on my to-do list.
Klinefelter’s Syndrome Association
A guide to Klinefelter’s Syndrome by the BBC
BBC Health: Klinefelter’s Syndrome
Great site. I have klinefelter’s also. Found out in 1985, as a suggestion from tutors after they found out I had learning disabilities. I am 41 now, and it has been tuff, both on relationships and on jobs. I think it needs to be classified as a disability, because without the Testosterone life is pretty much hellish.