soy familiar de camila y como diagnostico le dieron el sindrome,nos gustaria interiorizarnos en algun tratamiento.

I have 7 daughters with this disease and it has helped me alot.

Just another person looking for information on my families as yet undiagnosed form of leukodystrophy. My prayers are with you all.

We have a two year + 3 month old son Greg who was initailly diagnosed as having Pelizaeus Merzbacher Disease (PMD) in July 2000 but following second MRI scan this week and discovery of a cyst we have been told it may not be PMD but AGS. We do not have full details on the cyst but were advised it may have started very early in mum's pregnancy. Do any other families have an AGS child with cyst(s) showing on MRI scan ? Also recent problems with "chilblain" type rash which erupted for first time as lesions although rashes had been appearing on a regular basis during last year or so.

Hello to all from Canada and the Jaehrlich family. We would just like to extend a (some what delayed!) thank you to all involved with the conference in May. The wonderful memories we have of meeting everyone, and all of the kindness we were shown, will never be forgotten. Thank you again!