The path to diagnosis, sometimes referred to as a ‘diagnostic odyssey’ can be a challenge. For many, obtaining an accurate diagnosis may take many weeks, months, or even years of tests and investigations. When your child or loved one is finally diagnosed with Tay-Sachs or Sandhoff disease, it may have a profound effect on you, your family, friends and extended network.
This section provides information on the health and social sectors in Australia, to help you to understand the context in which your child or loved one’s medical care and social support will take place.
It also explores what your journey might look like. While everyone’s experience will be unique, our hope is that this section helps you to understand the type of support available and the role of advocacy in getting the right support.
Lastly, it provides information on the ways in which you, your family, friends and extended network may be impacted by a diagnosis, aiming to provide you with tools so that you can all work together through challenging experiences.
I hope that this makes receiving a diagnosis just that little bit easier for you.
Anna Pak Poy