Directory of Batten Disease Resources

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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.

Subcategories

• Personal Pages

Resources in This Category

• Batten Disease

  http://en.wikipedia.org/wiki/Batten_disease
  Wikipedia article explains what it is, symptoms, history, inheritance factors, diagnosis, and treatment. Includes links to additional information.

• Batten Disease Information Page

  http://www.ninds.nih.gov/disorders/batten/batten.htm
  Information sheet compiled by NINDS, the National Institute of Neurological Disorders and Stroke.

• Batten Disease Support and Research Association

  http://www.bdsra.org/
  BDSRA goals, support groups, local chapters, and resources for parents and families of Batten Disease patients.

• NCL Resource: A Gateway For Batten Disease

  http://www.ucl.ac.uk/ncl/
  Information for families and professionals interested in, or affected by, this disease or neuronal ceroid lipofuscinosis (NCLs). Includes what it is, genetics, research, treatment, and family support.

• The Luke and Rachel Batten Foundation

  http://lrbf.org/
  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.

Related Categories

• Home > Health > Conditions and Diseases > Genetic Disorders

 

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