My name is Christa.  I am 35 years old and was diagnosed at the age of two with Sturge-Weber Syndrome.  I have Port Wine Stain located in my brain, hairline and gums.

I have been hospitalized more times than I can remember and although I have trouble understanding, I am able to complete a days duties just fine. Seizures have been a way of life for me.  When I was younger, they varied from patterns and types.

Now that I am older, my seizures remain focal, depending of course on my body. Fortunately, the concoction of medicines prescribed and which seem to work for me include;  Depakote , Keppra and Phenobarbital.

Editors Note:  The Sturge-Weber Foundation is a great resource available for patients with Sturge-Weber Syndrome.  The foundation’s ‘Faces of Miracles’ campaign, launched in 2009, was initiated as part of their mission toward finding a cause, cure and treatment for those diagnosed with Sturge-Weber Syndrome.

3 thoughts on “Seizures and Port Wine Stain with Sturge-Weber Syndrome”

  1. koko says:

    my name is koko i leave in indonesia , i have son, was inspected struge weber syndrome
    i very difficult to do medicine , cause iam not understanding
    please give the advised to for treatment my son and how to recovery for this case

    thanks very much
    regards

  2. Nice to meet you Koko! We are glad you were able to find us and hope the following information will be of help to you.

    The NIH (National Institute of Health) https://www.ninds.nih.gov/disorders/sturge_weber/sturge_weber.htm – provides an informational page on Sturge-Weber Syndrome. In addition, they list organizations which provide patient support, medical information and resources for treatment. One of those organizations is the Sturge-Weber Foundation: https://www.sturge-weber.org/. You can contact them by email: swf@sturge-weber.org. I’m sure they will be able to guide you in your efforts to help your son.

    All our best.

    – The Global Genes Team

  3. Ummie_Arlia says:

    Hi.. Good Morning. I’ve seen the web that given to Koko. Is there any Teams of this support group in Asia?
    I have a baby age 103 days are being diagnose as a Weber Syndrome patient and we are going through some hard time now…

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