World map of Sturge Weber Syndrome


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Sturge Weber Syndrome stories


AMELIA-MISS MILLIE


amelia was born Sept 2,2014. She has Sturge Weber. She had a hemi in Sept of 2015 due to seizures. She has been seizure free so far. She a port wine stain over most of her face and has had three lazier treatments so far. She had Glaucoma surgery at 4...

Views: 750 by Mary Kolb

MY SON'S STORY


I am the parent of a young man who was born in 1987. I have met many families of children with Sturge Weber syndrome as I helped form a support group.

Views: 740 by Lynn Buchanan

PAULO


Hello! I'll try to write, but my english needs improviment, ok? Paulo was born on December 14, 2007. He was born with a port wine stain on the right side of the face. A port wine stain also appears in his leg and right foot. When Paulo was six months...

Views: 662 Jan 4, 2016, 3:47 PM by Paulo Leandro Machado Viana

SEVERINE'S STORY


je suis malade depuis mes 9 mois, mais la maladie est née avec moi. Je ne peux rien faire seule, j'ai un important retard mental. Plus de crises depuis mes 12 ans l'épilepsie est stabilisée. Je vis dans un foyer médicalis&...

Views: 649 by severine

FROM A SISTER'S POINT OF VIEW


I'm 5 years younger than my brother with Sturge Weber Syndrome and we grow up together with our parents in Sweden. We both now have our own apartments in different towns, I have a cat and my brother has a dog. Our parents work in the theatre bus...

Views: 523 Apr 21, 2016, 6:15 PM by Emilia Fichtelius

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