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...
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...
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&...
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...
4 people with Sturge Weber Syndrome have taken the SF36 survey. Mean of Sturge Weber Syndrome is 1671 points (46 %). Total score ranges from 0 to 3,600 being 0 the worst and 3,600 the best. Take the SF36 Survey