Hi, my 9 year old daughter is currently being diagnosed and I had was terrified when I read what this rare disease was. I found this society by chance and I don't know what I'm expecting really.... Bit daunted by the whole thing. I'm shocked about how many people are affected and have found it so useful reading other people's experiences. The dietary aspect I've found very useful and am determined to help her by trying anything! It's such a horrible thing. I live in Lancaster. Where is my nearest meeting or info point? Any help would be much appreciated.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.