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What is 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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National Carers Week 2020

Replay the free online webinars and self-care and wellbeing workshops for carers conducted during Carers Week 2020.

A Caregiver’s Handbook for Advanced-Stage Huntington Disease – Pollard, J. (ed.) 1999

The aim of this book is to familiarise carers with Huntington's disease, so that they can recognise its symptoms and know what to expect as it progresses.
It also includes general principles of care and tips that other carers have found useful.

Isolation tips and support for young people and their families 

As everything changes around us day by day, in ways most of us have never experienced before, we are feeling a lot of uncertainty – in our own lives, for our families, friends and for the world in general. In a situation like this, both the known and the unknown can cause increased levels of worry and stress, especially for those in families affected by Huntington’s disease who are already coping with a lot.
Access our Youth Connection counselling services.

Global Connections for Huntington’s NSW ACT

I had the privilege of attending the EHA conference in Bucharest, Romania in October 2019.
Here's a few stand-out presentations and posters and Q&A with John Eden, CEO of the Scottish Huntington’s Association.

Coping with self-isolation for People with Huntington’s disease

Huntington’s disease can be challenging on a good day, therefore preparing for self-isolation and being informed on the best ways to cope during this difficult and confusing time is very important. Below, are some tips on coping with COVID-19 isolation for people with Huntington’s disease.

Coping well and finding resilience

Dealing with life’s challenges as a young person can be difficult. School, work, relationships, friendships and family usually provide more than enough to cope with, put the extra challenges HD brings on top of all of this and it’s no wonder kids and young people affected by HD have a much harder path to navigate.

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