Tay-Sachs Disease

Treatment Overview

Treatment is aimed at controlling symptoms. For example, your child may take medicine 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 counseling 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 gets worse.
• 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. This form of the disease was recognized only recently, so not much is known about its course. But it is known that the nervous system effects get progressively worse over time. The treatment you receive, such as medicine for depression, depends on the symptoms you have.

You may need individual counseling to help control any behavioral or mental disorders that develop. Your family may need family counseling 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 a living will and durable power of attorney. For more information, see the topic Care at the End of Life.

What To Think About

An animal study has used gene transfer to put hex A enzyme in the brain so it will move to the rest of the body where it is needed.⁴ Although preliminary, this study and other studies may offer future hope for Tay-Sachs disease treatment. Talk to your doctor for information about clinical trials and other research taking place.

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Author:	Debby Golonka, MPH	Last Updated: April 4, 2008
Medical Review:	Michael J. Sexton, MD - Pediatrics Siobhan M. Dolan, MD, MPH - Reproductive Genetics
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