My name is Laura Lou, I am 20 years old and from Wales in the United Kingdom and I live with Kabuki Syndrome.

I only found out that I had this condition a few years back, from looking at my records on file at my university. I remember hearing that my parents were told that not to expect anything academic out of me, but I have since proven people wrong as I have 9 GCSEs, a GNVQ INT and AVCE Double Award Qualifications and now I am studying at University.

I am not entirely sure what Kabuki is and what people can do to help or support so I am after advice and to give advice if and where I can. When I was under 10, I remember having to have an operation on my right ankle because the tendon was too loose and my foot was flat (I am not sure if this is because of the Kabuki), and after I spent 6wks in plaster cast, I was able to start walking more properly. But even now I have noticed that I have problems with the foot as when I am walking it turns inwards when to me it feels I am walking straight. Also my joints have never dislocated but been creaking lots and leaves it painful and sometimes hard to walk.

I know that I have got an arched palate and disaligned teeth, which dentists have tried fixing with braces but never worked. As some of them are bigger than others and one or two of them, it is like there is 2 rows, as one is directly behind the other. I also remember that when I was 3, they had to put gromits in my ears and I had to have speech therapy and could not say many words and even they were not correct. I still say my S's funny and people think I have a lisp when I do not. I think it is because of the arched palate.

I have had a fair share of behavioural problems but it was made worse by bullies because I was different in facial features and I was spending more time on my own because I did not feel people understood me. I can get bad tempered and quite argumentative. I have also been told that I have a mental age of someone younger than me, and also that I am social immature, which I agree with to some extent, but I disagree with too as I now am settled with my fiancee, who understand what I have and doesn't judge me.

I would to get in contact with people who have Kabuki Syndrome or people who live with someone who has this condition so I know more about it and it will help me understand it and know that I am not alone. When I have been reading different websites, explaining what Kabuki Syndrome is, they use a lot of technical jargon and I find it difficult to understand long words.