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Home : Health : Conditions and Diseases : Genetic Disorders : Batten
Batten
Batten Disease is named after the British pediatrician who first described it in 1903. Also known as Spielmeyer-Vogt-Sjogren-Batten Disease, it is the most common form of a group of disorders called neuronal ceroid lipofuscinoses (or NCLs). Although Batten Disease is usually regarded as the juvenile form of NCL, it has now become the term to describe all forms of NCL. The basic cause, progression, and the outcome are the same. The forms of NCL are classified by age of onset but are all genetically different.
Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Juvenile Batten Disease become blind, bedridden, and unable to communicate. Juvenile Batten Disease is always fatal by the late teens or twenties.
Batten Disease is not contagious or, at this time, preventable.
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Sites in Batten
The Natey Foundation
Information for parents and families of Battens victims.
Batten Disease Information Page
Information sheet compiled by NINDS, the National Institute of Neurological Disorders and Stroke.
Batten Disease Family Association
Information about the BDFA, which provides supportive, informative, networking for the families, carers and professional giving care to children and adults with this disease in the United Kingdom.
Nathan's Battle
Details a boy's fight against Batten's Disease and dedication to promote awareness to help find a cure.
Batten Disease Support and Research Association
BDSRA goals, support groups, local chapters, and resources for parents and families of Batten Disease patients.
seeAbility - Juvenile Battens Disease
An in depth article on this disorder, includes the stages of the disease and the symptoms.
The Luke and Rachel Batten Foundation
Created to engage in education and medical research toward diagnosis, treatment and/or cure of Juvenile neuronal ceroid lipofuscinosis (Batten disease) and to assist persons with the disease.
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Friday, 12 March 2010