This section is for people who have just been diagnosed, or are in the process of being diagnosed with Huntington’s Disease (HD). It is also for people who are the partner, relative or friend of someone who has received a diagnosis.

Being diagnosed with Huntington’s Disease (HD) is often frightening and confusing for the person with HD and their family. Questions about how to manage symptoms, how to tell other people, money, relationships, and quality of life can cause worry and stress. You may not know where to begin or what questions to ask. You are not alone in this journey. The following pages contain information and advice that will hopefully help you and your family make decisions about your future.

Remember that people generally live with for a long time with HD.  It can be overwhelming to stop and think about all the difficulties you might face, as if they happen all at once. Changes happen over time and people can find ways of dealing with issues, one at a time. You can live your life well, even with HD, especially if you make use of the support services available.

» Fact Sheets
Information about HD, including symptoms and treatment, driving and transport

» Books and DVDs for loan
Huntington’s Victoria has a range of books and videos/DVDs available for loan.

» Family stories
Stories about living with HD; Tell your story

» Need to talk?
Contact us by phone or email, or chat online.

» Newsletters
Read the latest quarterly newsletter

» Latest News and Events
Keep informed about local events, meetings, social gatherings and conferences.

Other websites

The Huntington Society of Canada has useful downloadable publications:
Understanding Behaviour in Huntington’s Disease: A practical Guide
Learning about HD-A Childs Response
Juvenile HD: A Resource for Families, Health Professionals and Caregivers

The Stanford University Hopes website provides information on HD for the lay person. It includes excellent short videos, and online books for children.