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Old 02-02-2006, 04:56 AM
hankbartenbach hankbartenbach is offline
Senior Member
Join Date: Oct 2002
Location: Nebraska
Posts: 533
Default Re: cafe au lait

Hi tvmom,

First of all welcome to the group.

I am a 23 year old with facial PWS/SWS.

I agree with Corinne you should send a picture and ask some question to the Ask the Expert. Also, if you can look under the resourse section at the top of the website under for a doctor in your area or one that you are willing to drive to.

With what you discribed it sounds like your daughter has a Port Wine Stain (PWS) birthmark. Because it is in the eye I strongly suggest getting her eyes checked regularly for signs of glaucoma. If they find glaucoma she could have a form of Sturge Weber Syndrome (SWS). Only a MRI with/without contrast is the only way to tell.

In my personnal opinion scarring will be a very small factor for having laser treatment on her birthmark. Out of 18 year of laser treatment I have not been scared but once and it was a new laser still in experemental stages. A doctor is the only way to tell for sure though. I do know a couple of people that are Afrian Am that have PWS and their biggest consern is the pigmentation changing from the laser treatment in the area of the birthmark. A Dermotologist would have to answer that question as well.

Again I would strongly suggest getting the eyes checked out just to make sure. There is a lot of info on this group and groups linked to thsi group about SWS if you are intersted in doing research on it.

Hope this helps and if you have any other questions please ask we are here for you.

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