Tay-Sachs Disease

Treatment Overview

Treatment is aimed at controlling symptoms, such as medication for seizures. There is no cure for Tay-Sachs disease.

Treatment for classical or infantile Tay-Sachs disease

If your baby has Tay-Sachs disease, other support measures may be needed as the disease progresses, such as:

• Family counselling to help family members cope with the disease and prepare for the loss of the child. For more information, see the topic Grief and Grieving.
• Help with the child's care (respite care or home health care) as the child's condition worsens.
• A support group to share experiences with other families who are dealing with Tay-Sachs disease.

Treatment for late-onset Tay-Sachs disease

Treatment for late-onset Tay-Sachs disease (LOTS) also focuses on controlling symptoms. Since this form of the disease was recognized only recently, not much is known about its course. However, it is known that the nervous system effects get progressively worse over time. The treatment you receive, such as medication for depression, depends on the symptoms you have.

You may need individual counselling to help control any behavioural or mental disorders that develop. Your family may need family counselling to cope with the disease and its effects. Although you may live as long as other people who do not have Tay-Sachs disease, you still need to have an advance directive or a living will and a substitute decision-maker. For more information, see the topic Care at the End of Life.

What To Think About

Some animal tests have been done using the enzyme sialidase to reduce the accumulation of gangliosides, which build up in the brain and nerve cells.⁴ Another study was done using gene transfer, or putting the hex A enzyme in the brain so it will move to the rest of the body where it is needed.⁵ Although this is preliminary, these studies may offer future hope for Tay-Sachs disease treatment. Talk to your health professional for more information.

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Author:	Carrie Henley Sabra L. Katz-Wise	Last Updated: June 20, 2006
Medical Review:	Adam Husney, MD - Family Medicine Michael J. Sexton, MD - Pediatrics Renee H. Martin, PhD - Medical Genetics
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