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  Sandhoff Disease 
  
Reviewed  12-14-2001  

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What is Sandhoff Disease?
Is there any treatment?
What is the prognosis?
What research is being done?

Organizations

What is Sandhoff Disease?
Sandhoff disease is a rare, genetic, lipid storage disorder resulting in the progressive deterioration of the central nervous system. It is caused by a deficiency of the enzyme hexosaminidase which results in the accumulation of certain fats (lipids) in the brain and other organs of the body. Although Sandhoff disease is a severe form of Tay-Sachs disease—which is prevalent primarily in people of European Jewish descent—it is not limited to any ethnic group. Onset of the disorder usually occurs at 6 months of age. Symptoms may include motor weakness, startle reaction to sound, early blindness, progressive mental and motor deterioration, frequent respiratory infections, macrocephaly (an abnormally enlarged head), doll-like facial appearance, cherry-red spots in the back of the eyes, seizures, and myoclonus (shock-like contractions of a muscle).

Is there any treatment?
There is no specific treatment for Sandhoff disease. Treatment is symptomatic and supportive.

What is the prognosis?
The prognosis for individuals with Sandhoff disease is poor. Death usually occurs by age 3 and is generally caused by respiratory infections.

What research is being done?
The NINDS supports research on genetic disorders such as Sandhoff disease. The goals of this research are to increase scientific understanding of these disorders, and to find ways to prevent, treat, and, ultimately, cure them. Scientists have had some limited success in studies using the mouse model of this disorder by inhibiting the formation of the accumulating lipid. The animals fare better but the treatment is still far from life-saving.

Select this link to view a list of studies currently seeking patients.

 Organizations

National Tay-Sachs and Allied Diseases Association
2001 Beacon Street
Suite 204
Boston, MA 02135
info@ntsad.org
http://www.ntsad.org
Tel: 617-277-4463 800-90-NTSAD (906-8723)
Fax: 617-277-0134

National Organization for Rare Disorders (NORD)
P.O. Box 1968
(55 Kenosia Avenue)
Danbury, CT 06813-1968
orphan@rarediseases.org
http://www.rarediseases.org
Tel: 203-744-0100 Voice Mail 800-999-NORD (6673)
Fax: 203-798-2291


NINDS health-related material is provided for information purposes only and does not necessarily represent endorsement by or an official position of the National Institute of Neurological Disorders and Stroke or any other Federal agency. Advice on the treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient's medical history.

All NINDS-prepared information is in the public domain and may be freely copied. Credit to the NINDS or the NIH is appreciated.


Provided by:
The National Institute of Neurological Disorders and Stroke
National Institutes of Health
Bethesda, MD 20892




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