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Tween Titans Tween Titans

About my siggy. . .

Posted by on May. 9, 2012 at 9:38 AM
  • 4 Replies

What the heck is Sturge-Weber Syndrome? As it's not very common, I'm sure some of you have asked yourself that. It is something that my ds2 (8 y/o, 2nd gr) has. 


It's named after the 2 doctors who "discovered" it, and is labeled a syndrome because it presents as a series of different things. Any combination of them can lead to the diagnosis. 


The most obvious sign is a portwine birthmark (pwb). It's usually on the face, can be on only one side (unilateral) or both (bilateral), and can also extend up into the scalp. If the eye(s) are included in the pwb, glaucoma can be present in the affect eye(s), and there can be vision problems. The extra blood vessels that make up the pwb can be mirrored on the brain and cause seizures and developmental delays. 


Ds2's pwb is unilateral, on the left side of his face, on his forehead, eyelid, some in his scalp, and a little bit on his cheek. Because his eye is involved (the white of his left eye has a pinkish cast to it), he does have glaucoma in that eye, and needs glasses because his eyesight is poorer in that eye. We are very lucky in that an MRI has shown no brain involvement, he's never had a seizure, and is, for the 2nd year in a row, being considered for the high ability class for his grade. 

Here he is at just a few days old:


This was in '08, after a laser treatment to fade his pwb:


This was taken Labor Day weekend last yr:



















by on May. 9, 2012 at 9:38 AM
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Replies (1-4):
Barabell
by on May. 9, 2012 at 10:11 AM

Thank you for the information. I look forward to the annual awareness post you make on Sturge-Weber Syndrome.

Wyldbutterfly
by on May. 10, 2012 at 4:52 AM

Thank you. I was wondering what Sturge-Weber Syndrome is.

Barabell
by on May. 10, 2012 at 11:35 AM

BUMP!

styler7
by on May. 10, 2012 at 2:40 PM
So happy he's doing well :)
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