Huntington's disease awareness week
6 November, 2000
Tracey Hender had a lifelong dream to travel Australia on a motorcycle. When she was told she had tested positive for Huntington’s disease (HD), she decided it was now or never.
Tracey’s 6 month odyssey around the country on a Harley Davidson has some added benefits: it is helping to overcome the negativity that accompanies a diagnosis of Huntington’s disease and to publicise this little known condition through events such as Huntington's Disease Awareness Week 2000.
HD is a neurodegenerative disease, caused by a defective gene. It is characterised by progressive and irreversible physical, cognitive and emotional symptoms and affects males and females equally. HD affects between 7 to 10 out of every 100,000 Australians. A child of an affected parent has a 50 per cent chance of inheriting Huntington’s disease.
During the early stages of HD, the affected person may lose physical coordination, become more clumsy and experience some mild twitching. As the disease progresses, memory, planning and judgement may be affected to the extent that concentration on a task is impossible. Personality changes such as depression and irritability are also common emotional symptoms. Life expectancy may be from 15 to 25 years or more after the onset of the disease.
Australian Huntington’s Disease Association CEO Tim McCarthy says the awareness week is a catalyst for putting HD on the agenda in the general community, and provides a chance to educate people about the disease and the services and support offered by the association.
‘Five times the number of people in Australia have a 50 per cent risk of the disease than are diagnosed’, said Mr McCarthy.
Mr McCarthy says Tracey is sending a positive message to the community and is a ‘very inspiring lady’.
Tracey has a family history of HD and pays tribute to her father, who also has HD, for his positive attitude and support.
‘My father is my inspiration in the way he deals with things on a day to day basis. He has given me hope that you can still lead a good and active life even after becoming symptomatic. The trick is to appreciate your own limitations and do what you can while you can,’ said Tracey.
Last Reviewed: 06 November 2000
- Australian Huntington's Disease Association
