Guestbook
camila rios
dimanche 11 novembre 2001 04:39
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soy familiar de camila y como diagnostico le dieron el sindrome,nos gustaria interiorizarnos en algun tratamiento.
anonymous
jeudi 1 novembre 2001 21:20
I have 7 daughters with this disease and it has helped me alot.
gillian
jeudi 25 octobre 2001 13:50
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Just another person looking for information on my families as yet undiagnosed form of leukodystrophy. My prayers are with you all.
victor henderson
jeudi 6 septembre 2001 23:09
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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.
Nancy Jaehrlich
lundi 3 septembre 2001 22:32
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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!
389 entries in guestbook