|Danny (centre) with his cousins on holiday|
Sturge Weber UK is a voluntary support group for families and adults affected by Sturge Weber syndrome, a rare neurological disorder. A registered charity, it was launched in 1990 as a independent group by the disability support organisation Contact a Family.
Sturge Weber syndrome
This is a rare disorder of unknown incidence and origin; although present at birth, it is NOT thought to be hereditary. Sturge Weber is usually indicated by a birthmark (port wine stain) somewhere on the face, usually involving the eye and forehead, also similar blood vessels on the brain, called an angioma. Those with SW often suffer from epilepsy, hemiplegia (a weakness or stiffness affecting one side of the body, similar in appearance to that of a stroke), glaucoma and learning difficulties. Symptoms usually occur in the child`s first year of life.
Membership is entirely free to professionals, anyone diagnosed with Sturge Weber syndrome and their families.
- To provide support and information on differents aspects of the syndrome and to raise both public and professional awareness of the condition.
- To promote medical research into the causes and treatment of this syndrome.
- A Family Weekend is organised every eighteen months when doctors and other professionals talk about relevant topics.
- A Newsletter is produced and information leaflets are available.