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Huntington’s disease specialists are medically trained as either neurologists or neuropsychiatrists. Unlike other practicing neurologists or neuropsychiatrists, HD specialists have both experience and expert knowledge of this condition. To be seen by a HD specialist you will need a referral from your GP or other neurologist/neuropsychiatrist who is currently overseeing your care.
What services do the specialists provide?
HD specialists run a number of public HD clinics throughout the year to enable clients the opportunity to be regularly reviewed and monitored by their specialist. HD specialists are key players in formulating and coordinating your multidisciplinary approach to care.
HD specialists are also actively involved in research pertaining to Huntington’s disease and are also involved in the Predictive Testing Program at the Murdoch Institute. HD specialists are also available to provide secondary consultation to other professionals such as your GP who monitor your day to day care.
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Rural Support
Living in rural areas can be extremely isolating for people affected by HD. Access to services, information and support can be challenging and difficult due to a number of different barriers including geographical location. However there are services in your local community that can provide support and assistance to you.
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What is Genetic Testing
Genetic testing is the analysis of an individual’s genetic make- up to test for mutations in people’s genes which may result in genetic disorders like Huntington’s disease. In Australia, genetic testing is available for people who are at an increased risk of being a carrier for a mutated gene (e.g. breast cancer) or test those at risk of having inherited a genetic condition such as HD. Genetic testing is also utilised to confirm diagnosis of medical conditions.
Whilst genetic testing can inform you on medically important information pertaining to your health, there are advantages, disadvantages and limitations of being tested (please see table below).
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There are a number of services available in Victoria to assist carers in their role. These supports are listed below and are easily accessible should you require support.
Carer’s Victoria
Carers Victoria is a state-wide service that supports carers throughout the state of Victoria. Carer’s Victoria offers a broad range of services to enable a greater quality of life for the 700,000 Victorians that provide care to a family member.
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Centrelink is a Federal Government Statutory Agency which provides financial support to families and individuals to assist them to maintain independence. Centrelink provides payments and services on behalf of other government departments.
Most commonly clients of Huntington's Victoria will have contact with:
Centrelink staff have their own area of expertise so it is important that when you have a question about your entitlements that you speak with someone who has relevant knowledge.
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Financial and Legal Assistance |
Financial help
At times we are all faced with financial uncertainly and this may happen to you. Remember that support and information is out there to help you during this time. Please click on the appropriate link to direct you to the support you require and to access additional information.
| Anglicare Victoria |
Provides emergency food and material aid. |
| Centrelink |
Advises on government disability, sickness and carers' payments. Read our guide to Centrelink |
| Wesley Mission Credit Helpline |
Advises community workers and consumers about credit and debt problems. |
| Good Shepherd Youth and Family Service |
Provides emergency accommodation and other services. |
| Salvation Army |
Provides emergency financial assistance, clothing, house furnishings and shelter. |
| Utility Relief Grant Scheme |
Provides once-off assistance for domestic customers who are unable to pay their gas, electricity or water bills due to a temporary financial crisis. Conditions apply. Apply to your utility supplier. |
| Victorian State Concessions |
A number of concessions are available through the State Government in relation to Energy, Hardship, Rates & Property, and Water. For further information on the concessions available such as the medical cooling concession please access the Victoria State Concessions website |
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