CategoriesFiles
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General Information
This section provides new articles, books and general information on Huntington's Disease that are available to download.
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Young People
This information is for young people who want to learn more about Huntington’s Disease.
Useful Links:
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At Risk Or Gene Positive
A person who has a parent with HD has a 50% chance of inheriting the HD gene. This means that out of every 100 children born to a parent with the HD gene, 50 will inherit the faulty gene. This is described as being ‘at risk’ of developing HD. A gene test is available which allows a person at risk to find out if they carry the faulty HD gene and will someday develop the disease. The test cannot determine when the symptoms of the disease will begin or how severe the symptoms will be. People whose test result shows that they carry the faulty gene are described as "gene positive."
This information is for people who are at risk of inheriting Huntington’s Disease, or who are gene positive.
Useful Links:
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Diagnosed
This section is for people who have just been diagnosed, or are in the process of being diagnosed with Huntington's Disease (HD). It is also for people who are the partner, relative or friend of someone who has received a diagnosis.
Being diagnosed with Huntington's Disease (HD) is often frightening and confusing for the person with HD and their family. Questions about how to manage symptoms, how to tell other people, money, relationships, and quality of life can cause worry and stress. You may not know where to begin or what questions to ask. You are not alone in this journey. The following pages contain information and advice that will hopefully help you and your family make decisions about your future.
Remember that people generally live with for a long time with HD. It can be overwhelming to stop and think about all the difficulties you might face, as if they happen all at once. Changes happen over time and people can find ways of dealing with issues, one at a time. You can live your life well, even with HD, especially if you make use of the support services available.
Useful Links:
Other Australian HD Associations
Genetic testing & family planning & Organ Donation
Research, Studies and Foundations
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Carers and Families
This information is for carers, families and friends of people who have been diagnosed with Huntington's Disease. We will keep adding useful links and information so keep coming back to this page for more information and support.
Useful Links:
Other Australian HD Associations
Message Boards and Social Support Networks
Genetic testing & family planning & Organ Donation
Research, Studies and Foundations