Batten disease is a fatal, inherited disorder of the nervous system that begins in childhood. In some cases, the early signs are subtle, taking the form of personality and behavior changes, slow learning, clumsiness, or stumbling. Symptoms of Batten disease are linked to a buildup of substances called lipopigments in the body's tissues. Lipopigments are made up of fats and proteins. Because vision loss is often an early sign, Batten disease may be first suspected during an eye exam. Often, an eye specialist or other physician may refer the child to a neurologist. Diagnostic tests for Batten disease include blood or urine tests, skin or tissue sampling, an electroencephalogram (EEG), electrical studies of the eyes, and brain scans.
|Batten Disease Support and Research Association
166 Humphries Drive
Reynoldsburg, OH 43068
Tel: 800-448-4570 740-205-6432
|Children's Brain Disease Foundation
[A Batten Disease Resource]
Parnassus Heights Medical Building, Suite 900
San Francisco, CA 94117
|Nathan's Battle Foundation
[For Batten Disease Research]
459 State Road 135 South
Greenwood, IN 46142
|Hide and Seek Foundation for Lysosomal Storage Disease Research
6475 East Pacific Coast Highway
Long Beach, CA 90803
Office of Communications and Public Liaison
National Institute of Neurological Disorders and Stroke
National Institutes of Health
Bethesda, MD 20892
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Last updated October 18, 2012