The classic, infantile form of Tay-Sachs is a progressive disorder that often cause life-threating complications early in life. Most children pass away by the age of 4 or 5. However, research is ongoing to find treatments and, ultimately, a cure for this disorder. The National Tay-Sachs & Allied Diseases Association has information for parents and families on how to cope with this disorder and what to do when your family receives a diagnosis of Tay-Sachs disease.
The onset of the juvenile form is sometime between the ages of 2-6. The disorder gets worse more slowly than does the infantile form. Most children become unresponsive during their early teen-age years and pass away a few years later.
The late onset form is highly variable. This means that it affects people very differently. Sometimes symptoms begin in the teen-age years, while other times people aren’t diagnosed until well into adulthood. Because of this variability, making statements about prognosis for late onset Tay-Sachs disease is difficult.
