VBF-Sturge-Weber Syndrome Community

Official chapter of the Vascular Birthmarks Foundation (VBF)

Attention Deficit Disorder/Attention Deficit Hyperactivity Disorder (ADD/ADHD)– Disorder of the central nervous system. Patients can have trouble concentrating, paying attention, and processing information and stimulation. Children often exhibit problems in school, with the inability to sit still or follow directions, and with speaking out at inappropriate times.

Atrophy– The deterioration or shrinking of tissue.

Bilateral– Affecting both sides.

Blebs– A blister or pustule.

Calcification– The hardening of tissue (brain tissue in relation to calcification regarding SWS).

Computed Axial Tomography (CAT Scan)– The creation of a computer generated three-dimensional image from and X-ray.

Cobblestones– Blebs and nodules in PWS are often referred to as cobblestones. Bumps under the skin can look like small pebbles or cobblestones, creating an uneven skin texture.

De-bulking– The process of surgically removing excess tissue from areas like the lip.

EEG (electroencephalogram)– Test used to detect abnormal electrical activity of the brain.

Glaucoma– Eye disease, which causes increased fluid pressure and damage to the optic nerve. There are often no symptoms and vision loss can be rapid.

Hemiparesis– The weakness or slight paralysis of one side of the body.

Hemispherectomy– The removal of one hemisphere or lobe of the brain.

Laser (Light Amplification by Stimulated Emission of Radiation) – Treatment for PWS by use of the transmission of an intense beam of bright light to the affected area. There are many types of lasers and laser manufacturers. Consult your physician for more information.

Learning Disability– Including, but not limited to, the difficulty with reading, spelling, language, math, etc.

Magnetic Resonance Imaging (MRI)– The generation of a highly detailed 2-dimentional or 3-dimentional image of tissues inside the body using a magnetic field.

Nodules– A knoblike growth or bump, protruding from the skin.

Port Wine Stain (PWS)– PWS is present at birth, and is a mass of malformed and dilated blood vessels in the skin.

Sturge-Weber syndrome (SWS)– A disease present at birth (congenital), usually defined by a PWS on the face, and can include a variety of symptoms such as brain involvement, seizures, and glaucoma.

Seizures– There are many different types of seizures, and some patients can experience one or more of these types. The area of the brain affected can determine the type, severity and frequency of seizure activity. Patients are diagnosed on an individual basis. Signs of seizure can include, but aren’t limited to, one or more of the following: loss of consciousness, staring, suddenly collapsing and falling, jerking or convulsing of the face or limbs, or the stiffening limbs. Consult a physician for information and diagnosis.

Unilateral– Affecting one side.

Vagus Nerve Stimulator (VNS)– A device implanted in the chest with two wires leading to the vagus nerve in the left side of the neck. A magnet is also used with the VNS. When a seizure is sensed to be coming on, the magnet is passed over the implanted device, generating extra stimulation to interrupt the seizure. This treatment is not considered a cure for seizures.