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What is Huntington’s disease (HD)?

Huntington’s disease (HD) is an inherited, relentlessly degenerative brain disorder with physical, cognitive and emotional symptoms. It affects both males and females and symptoms usually begin to appear between 30 and 50 years of age. Less commonly, HD may develop in youth (under 20 years – Juvenile HD) or older adults (Late Onset HD).

HD is caused by a defective gene on chromosome 4 that causes an excessive build-up of the protein, ‘huntingtin’. This protein build-up damages nerve cells in parts of the brain, affecting neurological function and causing HD. Each child of a parent with the defective gene has a 50% chance of inheriting HD.

It was estimated in 1996 that the prevalence for HD in NSW is 7.3 people per 100,000 of the population. Those at 50% risk of inheriting the HD mutation are estimated at 25.2 per 100,000.

Based on a population for NSW and ACT of 8,375,100 (ABS March 2018) this translates to:

  • 612 people with HD
  • 2,110 people at 50% risk.

In fact the prevalence is probably higher than this. New prevalence data are expected in the near future.

Currently, there is no definitive treatment or cure for HD. However, research has led to improvements in the management of symptoms. Research is being conducted worldwide to find effective treatments to delay the onset of HD and to slow its progression.

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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.