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 bdsra1@bdsra.org http://www.bdsra.org Tel: 800-448-4570 740-927-4298 Fax: 740-927-7683 |
Children's Brain Disease Foundation
[A Batten Disease Resource] Parnassus Heights Medical Building, Suite 900 Suite 900 San Francisco, CA 94117 jrider6022@aol.com Tel: 415-665-3003 Fax: 415-665-3003 |
Nathan's Battle Foundation
[For Batten Disease Research] 459 South State Road 135 Greenwood, IN 46142 pmilto@indy.net http://www.nathansbattle.com Tel: 317-888-7396 Fax: 317-888-0504 |
Hide and Seek Foundation for Lysosomal Storage Disease Research 4123 Lankershim Boulevard Suite 302 No. Hollywood, CA 91602-2828 info@hideandseek.org http://www.hideandseek.org Tel: 818-762-8621 Fax: 818-762-2502 |
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Last updated July 15, 2008