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Sturge-Weber syndrome

 

Sturge-Weber syndrome (SWS) is a neurological disorder. Its most apparent indication is port-wine stain on the skin of the face. However not all port-wine stain is an indication of SWS: only 6% of the babies born with a port-wine strain have symptoms associated with this syndrome. This stain is a birthmark and is caused by dilated blood vessels in the face that give the skin the red colour. Blood vessels in the brain may be affected as well. To be diagnosed with SWS, the port-wine vessels and abnormal blood vessels in the brain should be on the same side.

A majority of people with SWS has seizures and convulsions. Further they may experience pressure in the eye, developmental delays, and weakness on one side of the body.

First-Step team treated children with this syndrome. Read below the story of Alicia with SWS.


THE STORY OF ALICIA

Alicia was born with Sturge-Weber syndrome on May 2007 in Lausanne, Switzerland. Family Portrait ?????? ????? Alicia was hospitalized at a very young age, and underwent several surgical procedures. Because of her symptoms and prolonged stays in hospital, Alicia had various developmental delays – motor, communication, and language. After two intensive First-Step therapy processes, at age three Alicia started walking without assistance for the first time. Today she is an independent little girl who talks, writes and attends a regular school twice a week.

“Until we got to know First Step, all the therapists told us what Alicia was unable to do. At First Step, we heard what she can do, and we received tools and training for working with her at home, as well. It was the central change that took us to these wonderful results…”– Bouchra and Ibrahim Murseli, Alicia’s parents

Alicia et First-Step article in French on AEMO’s website