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.