Rachael Wood

Rachael

I am a 36 year old lady living with Jeune syndrome. I was a complete surprise to my parents when I was born, having already had one child with no complications, and no scans. I was whisked away from my mum when I was born as they quickly realised something wasn’t quite right. It took however, two years before they had a definitive diagnosis for me. Although when he was alive my maternal grandfather could remember a baby that was born too small and died, perhaps a case of Jeune?

I am fortunate to only have a mild case of the condition, although I seem to be one of the shorter ones at only 4feet tall! I have also been lucky in that my health has been pretty stable, other than the obligatory chest infection with a cold as a child, and glue ear, I did ok. As I got older I grew out of this.

I went to a mainstream school with some special adaptions and measures to make life a little easier for me. I also went on to further education and held down both full and part-time jobs. However at the age of 28 I developed some problems with my spine that have since left me unable to work, and I suffer from hip dysplasia which has become very painful of late. Not sure if any of that is Jeune related or not?

I live in Wales with my sister and my niece. I drive and have a few hobbies that my body allows me to do for short periods of time.  Overall life is good and I remain positive and thankful that my complications are few.