Sturge-Weber Foundation – Bravelets

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Sturge-Weber Foundation

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Sturge-Weber Syndrome, Port Wine Birthmarks, Klippel-Trenaunay

 

Sturge-Weber Syndrome is a medical condition characterized by a facial Port Wine birthmark and varying degrees of glaucoma and/or seizure disorder.  The lifetime diagnosis impacts not only the individuals but their caregivers. The symptoms associated with Sturge-Weber are, seizures, glaucoma, physical, mental and developmental disabilities and in severe cases mental retardation and even blindness. The key marker for Sturge-Weber is a birthmark known as a Port Wine birthmark (PWB). Children who have this Syndrome are usually on multiple medications to help control seizures and glaucoma. They undergo painful laser treatments to help with the PWB which, if left untreated, can in some cases cause severe deformities which can lead to serious medical complications. Many children endure multiple surgeries for glaucoma and their PWB, and the most radical of surgeries is a Hemispherectomy. This is where all of or part of the affected area of the brain is removed or disconnected from the still healthy portion. 

Port Wine Birthmark (PWB) vascular capillary malformation birthmarks vary from light pink to deep purple, caused by an overabundance of capillaries just beneath the surface of the skin. The marks can be minimal to very extensive, covering 50% or more of the body. It is thought that a PWB develops within the first 2-8 weeks of gestation. One million Americans have a PWB with varying degrees of involvement.

Klippel-Trenaunay Syndrome (KT) is a congenital, vascular disorder of unknown cause. Klippel-Trenaunay is characterized by a triad of signs: A Port Wine Birthmark covering one or more limbs, vascular anomalies, usually venous varicosities or malformation and hypertrophy (enlargement of the limb) or atrophy (withering or smaller limb). KT normally involves the lower limbs in about 90% of the patients. In rare instances, there is an absence of Port Wine Birthmark and not all three abnormalities need always be present for the syndrome to exist.  Each case of KT is different. Patients may have symptoms including anemia from occult blood loss, coagulation (clotting) problems, blood clots and platelet trapping in the affected limb. Clotting problems are often first noticed with surgery, trauma or hormonal changes.

About the Sturge-Weber Foundation. Support, integrity, and vision.  These qualities have distinguished the Sturge-Weber Foundation since 1987.  Thousands of people have been served and continue to be served by the Foundation’s toll free access line, family networking program, education, physician referral service, medical education program and research endeavors.

 

The Sturge-Weber Foundation’s mission is to improve the quality of life for people with Sturge-Weber syndrome and associated Port Wine birthmark conditions through collaborative education, advocacy, research and friendly support.