Other Names for this Disease
- Beta-hexosaminidase-beta-subunit deficiency
- GM2 gangliosidosis, type 2
- Hexosaminidase A and B deficiency Disease
- Sandhoff-Jatzkewitz-Pilz disease
- Total hexosaminidase deficiency
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Since there are no specific treatments for Sandhoff disease, management is symptomatic and supportive. Supportive treatment includes proper nutrition and hydration and keeping the airway open. Anticonvulsants may be used to control seizures. In recent studies, a small number of children have received an experimental treatment using transplants of stem cells from umbilical cord blood. Although these limited trials have not yet produced a treatment or cure, scientists continue to study these and other investigational approaches. Additional information about investigational treatments for Sandhoff disease can be accessed through the National Tay-Sachs & Allied Diseases Association, Inc. web page for Sandhoff disease.
Last updated: 10/19/2011
- NINDS Sandhoff Disease Information Page. National Institute of Neurological Disorders and Stroke (NINDS). 2011; http://www.ninds.nih.gov/disorders/sandhoff/sandhoff.htm. Accessed 10/19/2011.
- Finding Treatment Information - A video developed by GARD Information Specialists that explains how you can find information about treatment for a rare disease.
- ClinicalTrials.gov lists trials that are studying or have studied Sandhoff disease. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.