Huntington’s disease

2-minute read

Huntington’s disease is an inherited condition that affects the nervous system. Although Huntington’s disease can occur at any age, symptoms often don’t appear until middle age.

Huntington’s disease is progressive, meaning it worsens over time. While there is no cure, treatment can alleviate symptoms and support is available.

Huntington’s disease symptoms

The main symptoms of Huntington’s disease are:

physical symptoms, such as stiffness, involuntary movements, changes in balance and co-ordination, loss of control of bodily functions such as swallowing and speaking, and fatigue
changes in thinking (cognitive) ability, such as difficulty concentrating, and deterioration of memory, judgement and speed of thought
emotional changes, such as changes in mood, loss of drive and initiative, impulsiveness, anxiety, depression, irritability and loss of empathy

Illustration showing the difference in structure of a normal brain and one with Huntington’s disease.

Huntington’s disease diagnosis

Huntington’s disease is diagnosed using:

neurological tests
psychological tests
blood tests
family history

Genetic testing can reveal whether a person carries the gene for Huntington’s disease. This can be used to confirm a diagnosis once symptoms appear, or when a person at risk of Huntington’s disease wants to know if they have inherited the gene. Generally, if someone has Huntington’s disease, their children have a 1 in 2 chance of developing it.

Living with Huntington’s disease

Many people with Huntington’s disease find it helpful to plan for the future. Considering financial, legal and care arrangements can give people with Huntington’s disease a sense of empowerment, and talking openly with loved ones can be a relief.

Huntington’s disease cannot be reversed or cured, but treatment and support can make it possible for people with the condition to live a healthy and satisfying life.

Options include:

physiotherapy and occupational therapy
medication to alleviate changes in mood
medication to help with jerky movements and difficulty swallowing
financial support through Centrelink
respite care, at home or in residential facilities
supported accommodation including private residential facilities, shared supported accommodation, accommodation for young people with Huntington’s disease, and residential aged care

Family and carer support

Huntington’s disease affects the brain, causing changes to the way people think, move, behave and express emotions. Sometimes people with Huntington’s disease don’t notice their symptoms progressing, and it can be difficult for family and carers to understand what is happening.

Support services are available to help carers, including respite care and supported accommodation options.