hi my name is sandy and i have sturge weber sydrome and i wandt to tell you a little about my self but fisrt i just wanted to say hi to ever one
Hi Sandy!
Glad you found us. My grandson has SWS. We live in KY too!
Glenda
Sandy - is that you asking?
My grandson has a "mild" case of SWS (for the lack of a better term). He has seizures which are well controlled by medication, and some learing disability/behavior issues. So far, no signs of glaucoma. He is very small for his age, so we are not sure if this is a result of SWS or family heredity. He is doing great!
Glenda
Sandy:
Just checking back to see how you are doing. We live not far from you in Lexington.
Glenda
Nice to meet you Sandy:
My name is Tom and I'm 38 years old, I found out 5 years ago only that I was diagnosed with SWS and I have a mild PWS on my eyelid and my scalp. I hope we can help you with our group and I hope you can help us on your end also....
Talk to you soon.
Tom