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Sturge-Weber Syndrome

Medline NLM definition: A congenital syndrome characterized by a port-wine nevus covering portions of the face and cranium (in the distribution of the ophthalmic division of the TRIGEMINAL NERVE) and angiomas of the meninges and choroid. Clinical manifestations include the onset of focal SEIZURES, progressive hemiparesis, GLAUCOMA, hemianopsia, and cognitive deficits in the first decade of life. By age two years, skull radiographs reveal "tramline calcifications" of the margins of the occipital and parietal lobes. Pathologically cortical neurons are replaced by glial tissue that undergoes calcification.

Sturge-Weber syndrome: information from Patient UK website

Sturge-Weber Syndrome: NINDS, the National Institute of Neurological Disorders and Stroke (US site)

Sturge Webder Syndrome: information from NORD, the National Organization for Rare Disorders (US site)

Pubmed Medline search on Sturge-Weber Syndrome

Support Groups 

Sturge-Weber Foundation (UK)
Aims to provide support and information on different aspects of the syndrome and to raise both public and professional awareness of the condition.  Promotes medical research into the causes and treatment of this syndrome.

Contact
Has information on over 1,000 rare syndromes and rare disorders and can put families in touch with each other. Also gives access to a database on rare conditions and disorders.

Brain and Spine Foundation
Information on living with a neurological condition and on diagnosis. There are publications and resources. The useful glossary of neurological conditions (under 'Information and support') includes links to some other organisations as well as to Brain and Spine Foundation information.

Healthtalk: nerves and brain
Personal experiences of people living with various neurological conditions.

Neurological Alliance
Collective voice for 80 organisations, including stroke and brain injury. Organisations are listed at https://www.neural.org.uk/our-members/, a good place to start if looking for information on those conditions. Site also includes information about living with a neurological condition, a glossary, and information about onset and diagnosis as well as a small set of real life stories. .

NHS Inform: brain, nerves and spinal cord 
NHS inform is Scotland's national health information service, with the aim of providing the people in Scotland with accurate and relevant information to help them make informed decisions about their own health and the health of the people they care for.


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