Hi. I'm Rosie, I have a 10 year old daughter with nf1. She has started
to get lot of pain in her legs and is needing an op soon. Were in the
UK, but there does not seem to be a lot of info on it here. I have
tried to call NF Assosiaction a few times but they are only open
certain times during the week??. My daughter has tumors down her leg
and a very large one on the bottom of her foot, which causes her pain,
her right leg is 3cm longer than her left. Her doctor said that the
problems she is having are rare and there is not a lot of info for them
to help her. Sorry if I'm moaning but info from the doctors is very
limited. I am not sure what help she should be getting or check ups,
any advice on this would be much appreciated. Rosie