How do you know if you have SWS? - Vascular Birthmarks Foundation Forum
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  #1  
Old 10-29-2005, 05:18 AM
juliebeans
 
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Default How do you know if you have SWS?

I was told by a dermatologist in 9th grade that I needed to be checked often for glaucoma. I am 25 and have a PWS surrounding my left eye, my eyelid, and some on my forehead. What are the symptoms? Also, I am rapidly losing my short term memory, does any of this affect that or is it because I have kids (smile)!! I am starting to feel scared because I have neglected it for so many years and havn't had one check up!!! Any advice would be great. Or a recommendation of a Doctor. I live near Pasadena CA.
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Old 10-29-2005, 05:47 PM
alexasmommy
 
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Default Re: How do you know if you have SWS?

Hi !!!
I would definatley go to the eye doctor as soon as possible. Run -don't walk !!!!!!! I dont want to scare you but Glaucoma can show so signs or symptoms, but damage can be done.
People who do show signs of Glaucoma, state peripheral vision loss, tearing of that eye,cloudiness of the eye,physical difference noted. Many show absolutely so signs.
As for SWS, did you ever have an MRI with contrast done? That is the test of choice at present to rule out SWS. You can have Glaucoma but not SWS.
Many adults have found out in adylthood that they indeed have SWS. They may have a mild case that was not noted or ruled out in childhood. Many with SWS have seizures, cognitive issues as infants or children but that is not always the case. Some do not have seizures and some adults began having seizures as adults. The seizures can also be very mild and not "noticed".
Have you ever done any laser treatments?
I would rule out any possibility of SWS and get to the eye doctor...
Good luck.....
Elena
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  #3  
Old 10-29-2005, 11:36 PM
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swsc swsc is offline
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Join Date: Feb 2004
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Default Re: How do you know if you have SWS?

Hello - Elena has given you some great advice regarding the need for further testing for glaucoma and for SWS.

If you have any further questions, please contact us at the Sturge-Weber Syndrome Community (a branch of the VBF). Our website is: http://swscommunity.org
email: swsc @ swscommunity.org (no spaces)

All the best,
Glenda
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