The Diseases

A note from Anna

Tay-Sachs and Sandhoff diseases are related disorders that occur when the body’s cells are unable to process and clear waste products. This results in a build-up of these waste products in the cells, making it difficult for them to function optimally.

In people with Tay-Sachs and Sandhoff diseases, the cells most affected are in the brain. This makes it hard for their brain to do its work, and it can get harder over time. The progressive loss of function eventually leads to the early death of the individual.

Tay-Sachs and Sandhoff diseases are very rare, both in Australia and across the world. This section aims to provide you with the essential information you require to understand these diseases, including their causes, symptoms, diagnosis and prognosis.

Both our online and hard copy booklets aim to provide you with the essential information you need to understand the diseases. Some families will want more detail than is provided in the hard copy Booklets, so we have collated additional online resources which you will find on this website. This will also allow us to ensure the information we are bringing you is accurate and current. Our intention is to be as comprehensive as possible in addressing the areas we know to be important in this journey, therefore reducing your need to independently source the information. This will enable you to enjoy your time with your child or loved one.

Anna Pak Poy