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Karen Ball, CEO of the Sturge-Weber Foundation, speaks with Joyce about Sturge-Weber syndrome (SWS) and the challenges faced by people with this condition. The Sturge-Weber Foundation provides support and services for individuals with Sturge-Weber syndrome, Port Wine Stain Birthmarks, and Klippel-Trenaunay syndrome.
Sturge-Weber Syndrome (encephelotrigeminal angiomatosis) is a congenital, non-familial disorder of unknown incidence and cause. It is characterized by a congenital facial birthmark and neurological abnormalities. Other symptoms associated with Sturge-Weber can include eye and internal organ irregularities. Each case of Sturge-Weber Syndrome is unique and exhibits the characterizing findings to varying degrees.
Because of the physical differences that people with SWS often have, they are frequently the object of rude or bullying behaviors. Sturge-Weber Foundation has taken up this challenge on behalf of all those with differences in their BullyBeGone Challenge. See http://www.sturge-weber.org
Come chat with Karen and Joyce.