HUNTINGTON’S Victoria has encouraged Gippslanders affected by Huntington’s disease to seek information and support following the organisation’s focus on the area in the past year.
Chief executive Tammy Gardner said they knew of 1500 people who had identified symptomatic or gene positive statewide, but the actual number of people living with the disease could be much higher.
“Gippsland is an area we’re concentrating on at the moment. It requires extensive support because of the (large) numbers,” Ms Gardner said.
Huntington’s disease is a genetic neurodegenerative disease which causes brain cell death and results in a gradual loss of cognitive, physical and emotional function.
HD is a complex and severely debilitating disease, for which there is no cure and following the onset of symptoms the average life expectancy is 15 to 25 years.
Ms Gardner said the symptoms of Huntington’s were often confused with signs of being alcohol and drug affected, because of the involuntary jerky movements sufferers commonly exhibit.
“One of the problems we find is people are reluctant to come forward because they think they will be discriminated against,” Ms Gardner said.
“We also find people in regional areas are resilient, independent and don’t like to ask for help.”
The small operation based in Melbourne runs mainly on donations and would like to raise funds for a part-time employee to work out of an office in Gippsland in partnership with a local provider.
“If people want to be proactive and act in a positive way, they could fund raise and we would set aside that money specifically for a worker in that area,” she said.
Anyone who wants to donate or is affected by the disease and wants to learn more is encouraged to phone 1800 063 501 or visit www.huntingtonsvic.org.au