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what it feels like
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sandy
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what it feels like

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
04-25-2005 01:26 PM
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swsc
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Hi Sandy!

Glad you found us. My grandson has SWS. We live in KY too!

Glenda
04-25-2005 05:38 PM
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How bad does he have it?
04-26-2005 01:15 PM
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swsc
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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
04-26-2005 03:15 PM
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swsc
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Sandy:

Just checking back to see how you are doing. We live not far from you in Lexington.

Glenda
05-04-2005 02:22 PM
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tgilbert
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Hi Sandy

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
08-10-2005 03:47 PM
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