What is Sturge-Weber syndrome?
A syndrome is a group of problems that occur together. The most common problem in people with Sturge-Weber Syndrome is angiomas which are cysts or tumors composed of blood vessels.
Sturge-Weber syndrome (SWS) is rare. It is present at birth in about one in every 50,000 babies. However, many people with SWS probably never know they have it, so it may be more common. SWS affects all races and both sexes equally.
What are the symptoms of SWS?
Symptoms include a port wine stain-type birthmark, often on the face. Neurologic problems like seizures and paralysis or weakness on one side of the body are also present. Parents may also notice learning disabilities.
How is SWS diagnosed?
Sturge-Weber syndrome can be hard to identify. There is no blood test for it, and no list of signs that must be present to decide that a person has SWS. For example, most people with SWS have a port-wine stain, but not all people with a port-wine stain have Sturge-Weber syndrome.
An MRI is often done to see if the person has too much blood vessel growth on the brain’s surface.
Some combination of these signs will be present:
- port-wine stain (large pink, red, or purple birthmark on the face)
- eye problems such as glaucoma (increased pressure in the eye)
- nervous system problems
- problems with other body organs
How is SWS treated?
There is no way to predict what problems a person with SWS will have, or how serious those problems will be. There is no cure. Treatment depends on the problems the person has, and may include:
- ADHD – treated with medicine and non-medicine therapies
- Developmental delays – treated with special education, rehabilitation
- Glaucoma – treated with eye drops or surgery
- Headache – treated with medicine and non-medicine methods
- Port wine stain – treated with laser treatments
- Seizures – treated with medicine or surgery
- Stroke-like events – treated with medicine to prevent blood clotting
About treatment for SWS at Children’s
Sturge-Weber Syndrome is treated through Children’s Vascular Anomalies Center, which is located on our Minneapolis campus. By coordinating experts from several pediatric disciplines into a single visit, families experience a new level of convenience in an environment focused exclusively on pediatrics. Every child is assigned a pediatric nurse case manager who coordinates all treatment and communication between care providers and the family.
For consultation, referral, or an appointment, call the Vascular Anomalies Center at 612-813-7100.