Tay-Sachs Disease

Tay-Sachs disease is a genetic condition that causes damage and, ultimately, the death of nerve cells (neurons) in your child’s brain and spinal cord. Symptoms like developmental delays, hearing and vision loss usually begin around 6 months of age.

It’s a progressive disease, meaning it gets worse over time. It leads to early death. There’s no cure, but treatment supports your child and keeps them comfortable.

What are the types of Tay-Sachs disease?

There are three types of Tay-Sachs disease. The type depends on when symptoms develop:

• Classic infantile: This is the most common form of Tay-Sachs disease. Children develop symptoms around 6 months of age.
• Juvenile: Children develop symptoms between the age of 5 and their teenage years. This form is very rare.
• Late-onset: Symptoms can appear during the late teen years or early adulthood. They can also develop after a person reaches 30 years old. This type may not affect your life expectancy. It’s also very rare.

The type of Tay-Sachs disease passes in families. For example, if one child inherits the infantile form, other children in the family aren’t at risk of late-onset Tay-Sachs disease.

How common is Tay-Sachs disease?

Studies estimate that approximately 1 in 300 people carry the genetic variant (mutation) responsible for Tay-Sachs disease. But the actual number of children born with Tay-Sachs disease is low, making the condition rare. Awareness, education and genetic testing help reduce the frequency of this condition among at-risk populations.