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Huntington’s Disease

Huntington’s Disease (HD Book Pink 2013) 

This is a general introduction to Huntington’s Disease (HD). It provides information for anyone interested in finding out more about HD, including people living with HD and their families and friends. 

Living with HD presents many challenges and these are unique to every person and family. Keep that in mind as you read through this document. This is general information and your individual experience may be different. 

Symptoms of HD usually appear when a person is in their mid-30s or 40s, although up to a quarter of people living with HD will not have symptoms until they are in their 60s. Symptoms manifest in 3 areas: involuntary movement (jerks and twitches); intellectual impairment; or changes in behaviour. 

HD is an inherited neurological disease. If one parent has the gene, each child has a 50/50 risk of inheriting the gene. Not everyone in a family will develop HD, but everyone will be touched by its emotional costs. HD is very much a family disease. 

Although we know which gene causes HD, there is currently no cure. However, advances in research and treatment mean that life for HD families is hopeful.  

If we all engage in open and frank discussions, and provide as much support as possible, we can all make a difference in the lives of people with HD and their families. 

 This booklet covers: 

the history of Huntington’s disease 

the prevalence of the disease and how it can be traced in families 

– what happens in the brain of people with HD, and how that impacts their movement and behaviour 

early symptoms 

– the progressive stages of HD 

– the risks and benefits of testing to find out if you have the HD gene 

– family planning decisions and sexual relationships 

– denial and coping strategies 

– current scientific research. 


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Position Statement: What we don’t need to prove but need to do in multidisciplinary treatment and care in Huntington’s disease

Abstract Background Huntington’s disease is a complex neurodegenerative hereditary disease with symptoms in all domains of a person’s functioning. It begins after a healthy start in life and leads through the relentless progression over many years to complete care dependency and finally death. To date, the disease is incurable. The long progressive complex nature of ... Read more

National Conference recordings

In May 2021 Huntington's NSW ACT hosted the national conference. This conference was virtual due to the COVID-19 pandemic. There were four key themes for the conference - achieving quality of care; achieving better policy outcomes; achieving better consumer outcomes; and research update.

Medical ID card

Did you know that we offer free Huntington’s disease identity cards? They provide information on HD and have space for emergency contact details. The cards can be attached to a lanyard to help others understand, or kept in a wallet in case of emergency. If you or someone you love would like a HD ID ... Read more

Carer Emergency care plan

The Carer Gateway have created an electronic template for carer’s to use and the latest version can be accessed here. An emergency care plan makes it easy for someone to take over from you in a hurry. It has all the information about the person you care for in one place, so you can get ... Read more

Australians need more protection against genetic discrimination: health experts

Authors: Jane Tiller and Paul Lacaze Published: October 5, 2021 Source: The Conversation   Excerpt: Genomic testing — the ability to read an individual’s genetic code and identify their risk of conditions such as cancer — has opened up huge possibilities in personalised medicine. But it has also introduced serious ethical challenges. Particularly, there is ... Read more

Normalising life at risk of Huntington’s disease. A qualitative study of backgrounds and coping strategies of fears of genetic discrimination

Studies in the sociology of genetics have shown how living with a predisposition to a genetic disorder often comes with significant psycho-social burdens and struggles. One of these struggles is the fear of genetic discrimination. Despite genetic non-discrimination regulations, research shows people still worry about being subjected to genetic discrimination. This article adds to this existing body of literature by showing why people still worry about genetic discrimination and how they cope with these worries.