Tay-Sachs Disease

Home Treatment

Home treatment for Tay-Sachs disease consists of providing comfort and preparing for the course the disease will take.

If your child has Tay-Sachs disease, talk with your health professional about:

• Your concerns and the guidance you need to deal with your child.
• Whether there is a support group in your area. Talking with other families dealing with Tay-Sachs disease may be very helpful.
• The chances that a child you have in the future will have the disease. You and your spouse may need genetic counselling.
• Family counselling to help each member deal with the effects of the disease.

As your child with Tay-Sachs disease progressively gets worse, he or she will require increasing care. Encourage your child to be as active as possible for as long as possible. Give your child the love and affection you would give to any child. Your child will be as responsive and active as his or her mental and physical ability allows.

Some families find that they cannot care for their child at home without help. Talk with your health professional about options in your community, such as respite care and other home health services that help families care for their loved ones at home.

As the disease progresses, it is important that you allow yourself to grieve. For more information, see the topic Grief and Grieving.

Late-onset Tay-Sachs disease

If you have late-onset Tay-Sachs disease (LOTS), you may need individual counselling to control any behavioural or mental disorders that you develop. You and your family may need family counselling to deal with the effects of the disease. It probably will be hard to find a support group in your area, but talk with your health professional about organizations, local agencies, and Internet resources that may be helpful for you and your family.

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.

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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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