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 jerky movements or stiffness, difficulty controlling limbs, changes in balance and co-ordination, loss of control of bodily functions such as swallowing and speaking, and fatigue
• changes to thinking, such as difficulty concentrating, and deterioration of memory, judgement or speed of thought
• emotional changes, such as changes in mood, loss of drive and initiative, impulsiveness, anxiety, depression, irritability and loss of empathy.

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 one in two 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 assist sufferers to remain active members of their community.

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 for loved ones with Huntington’s disease.