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I see that there is very little info on Sturge Weber syndrome. Why is this?

Posted by elizabeth


      I Have Sturge Weber Syndrome, but it seems unless you yourself have a prticular syndrome, there's no info on the situation.   If you need some, child, I have it, and so does the Sturge Weber Syndrome foundation.  But everyone with  SWS is different.  There is so much involved with SWS.  Port Wine stains, seizures, glaucoma, even severe mental problems, it just depends of the situation.   But however, people need to know this info.  It needs to be out there, and its cause, existance, what it is and what goes with it.   Perhaps there is no cure for it now, but the more info that gets out there, more the world would try to do something about it!  




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