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There are many ways you can help children and their families get the care they need.
The most common symptom of Sturge-Weber syndrome (SWS) is a port-wine stain, or birthmark, on the face. The birthmark is typically located near or around an eye or on the forehead, and varies in size and color. Although rare, it is possible for a child to have SWS without a facial port-wine birthmark.
Patients with SWS can have neurological problems. These problems are caused by excessive blood vessel growth (angiomes) on the brain. Generally, these vessels are located on the same side as the facial birthmark. The excessive blood vessel growth causes abnormal brain functioning, including seizures. Most patients with SWS will have seizures before age 1. Patients with SWS may also develop hemiparesis, a weakening or loss of the use of one side of the body, as well as varying levels of developmental delays. Only around 8 percent of children with a port-wine birthmark have neurological problems.
About 70 percent of patients with SWS also have glaucoma, or increased pressure in the eye, either at birth or later in life. Most children with SWS have glaucoma only in the eye with the port-wine birthmark.
The clinician will examine your child’s birthmark and do a complete exam. He or she may also order one of the following tests:
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”