Huntington’s disease (HD) is a rare degenerative condition that causes a breakdown in parts of the brain, resulting in rapid, jerky body movements and a loss of normal mental abilities.
In Australia, about 1,200 people currently have HD and approximately 6,000 are at risk of acquiring it because one of their parents have it, according to the New South Wales Huntington’s Disease Association.
A few other facts:
- Both women and men are affected by HD.
- A child of an affected person has a 50% chance of also getting it.
- All ethnic groups are susceptible to the disease.
- People from 2 to 80+ years of age can develop it.
- Physical symptoms can begin at any age, but are common between 35 and 44 years.
- The average lifespan after onset of HD is 10 – 20 years.
- The younger the age of onset, the more rapid the progression of the disease.
- HD eventually leads to complete dependence on others.
- The person with HD ultimately dies from complications such as aspiration pneumonia or heart failure.
Surveys have shown that, because HD sufferers need extensive care from their families and loved ones, the condition can have a profound effect on a wide circle of people.
The good news is that support groups and resources can make the world of difference in terms of understanding and managing Huntington’s disease. Excellent resources are available free of charge from local organisations such as the New South Wales Huntington’s Association.
These kits include important information on all aspects of disease management, including:
- Support services (for both patients and caregivers)
- Home help
- Legal and financial issues
- Disease complications
- Palliative care
- Loss and grief
The Commonwealth Carer Resource Centre produces excellent Huntington’s disease kids, which are available in New South Wales from CARERS NSW. Simply call 1800 242 636 (free call from local phones; mobile calls at mobile rates) or you can write to: Carers NSW Inc, Reply Paid 73627, SYDNEY NSW 2000.