Gene Positive

About Huntington's Disease

What is Huntington's Disease?

Huntington's Disease (HD) is a genetic neurodegenerative condition. It affects the brain and is inherited through a family line.

HD destroys the brain cells which affect the way people think, feel and move. There is currently no cure and only limited treatment available.

People with HD can experience depression, mood swings, forgetfulness, clumsiness and involuntary movements of the limbs. Eventually they may lose the ability to walk, talk or swallow.

A person may live for 15 to 25 years after developing their first symptoms, but this disease is invariably fatal.

HD typically begins between the ages of 30 and 45, although in rare cases it has been diagnosed in children as young as 2.

Who is at risk of HD?

Once thought of as a rare disease, HD is now considered to be one of the more common inherited diseases.

There are over 2,500 Victorians at-risk of inheriting HD.

HD affects males and females equally and crosses all ethnic and racial boundaries.

Each child of a person with HD has a 50/50 chance of inheriting the faulty gene. Everyone who carries the gene will develop the disease.

If a person does not inherit the gene, he or she cannot pass it on. HD never skips a generation.

HD and families

Huntington's disease can create a ripple effect throughout families and their communities. Within the family, multiple generations may have inherited the disease. People can often find themselves needing to care for a number of family members at the same time.

Although there is no cure for HD, support and services can help improve the quality of life for all those touched by HD.

Huntington's Victoria

We believe that people affected by HD can live meaningful and hopeful lives as valued members of the community.

Our team of social workers and psychologists connect people with the support they need.

Hope

  • We help people affected by HD to plan for the future and live positive lives
  • We promote research into treatment and a cure for HD

Dignity

  • We support people with HD to live with dignity and autonomy at home for as long as possible
  • We provide information and advice to help people with HD and their families make decisions about their care
  • We support carers with rest breaks, information and counselling

Awareness

  • We increase understanding and knowledge of HD in the community
  • We educate staff in nursing homes about how to support people with HD
  • We advocate for improved access to services for the HD community

We are a not-for-profit organisation and rely on funding from government and donations from the public.

How can you help?

Help us to provide support services for the HD community and improve awareness and understanding of HD.