Healthdirect Free Australian health advice you can count on.

Medical problem? Call 1800 022 222. If you need urgent medical help, call triple zero immediately

healthdirect Australia is a free service where you can talk to a nurse or doctor who can help you know what to do.

beginning of content

Huntington's disease

8-minute read

Key facts

  • Huntington's disease is an inherited condition that affects the nervous system.
  • Huntington's disease is caused by a faulty gene that someone is born with.
  • The most identifiable physical symptom is called chorea — rapid, involuntary movements of the fingers, limbs or facial muscles.
  • Other cognitive and emotional symptoms include impulsiveness and difficulty communicating.
  • There is currently no cure or effective treatment for Huntington's disease.

What is Huntington's disease?

Huntington's disease is an inherited condition that affects the nervous system. Although Huntington's disease can occur at any age, symptoms often do not appear until your 40s or 50s.

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

What are the symptoms of Huntington's disease?

Huntington's disease can affect a person's brain and body. Most people start experiencing symptoms as young adults or in middle age. However, some people may develop symptoms earlier, even before 20 years of age.

Physical symptoms

The most identifiable physical symptom is called chorea. This refers to rapid, involuntary movements of the fingers, limbs or facial muscles. It can progress from mild movements to severe thrashing as the disease worsens. Other symptoms include:

  • stiffness
  • loss of fine motor coordination, causing difficulties in activities such as writing
  • changes in balance and co-ordination
  • loss of control of bodily functions such as swallowing and speaking
  • fatigue

In the later stages of the disease, someone with Huntington's disease may develop difficulty swallowing. This can lead to weight loss and a risk of choking. They are also at increased risk of falls and may develop incontinence.

Cognitive (thinking) changes

Cognitive symptoms are harder to notice, as they mainly affect the way you think. Symptoms may include:

  • difficulty concentrating
  • impaired thinking, planning and organisation
  • reduced short-term memory
  • being impulsive or disinhibited
  • fixating on certain thoughts, ideas or feelings (known as perseveration)
  • difficulty communicating (especially with speaking or finding specific words)
  • difficulty learning new things

Emotional changes

Mental health issues (such as anxiety, depression, mood swings and psychosis) can affect people with Huntington's disease. Some symptoms include:

What causes Huntington's disease?

Huntington's disease is caused by a faulty gene you are born with. A person only needs to inherit the gene from one parent to be affected by Huntington's disease. If you have the gene, there is a 1 in 2 chance that you will pass it on to your child.

If a child does not inherit the gene, they will not develop Huntington's disease or pass it on to their own children or grandchildren.

Huntington's disease results in the death of brain cells. The parts of the brain affected are the frontal lobe and basal ganglia. These are responsible for movement, thinking, personality and emotions.

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

When should I see my doctor?

If you have a blood relative who has been diagnosed with Huntington's disease, you can have a gene test to see if you carry the gene.

If you are 18 years old or older, talk to your doctor about whether you should have the test.

FIND A HEALTH SERVICE — The Service Finder can help you find doctors, pharmacies, hospitals and other health services.

ASK YOUR DOCTOR — Preparing for an appointment? Use the Question Builder for general tips on what to ask your GP or specialist.

How is Huntington's disease diagnosed?

If there is a chance you have Huntington's disease, your doctor will discuss your family history and check for any signs or symptoms of the disease. They may order an MRI or CT scan to look at your brain, but these may not be very useful in the early stages.

Other tests may include:

  • neurological tests to check the activity and health of your nerves
  • psychological tests to assess your mental health
  • neuropsychological tests to assess your memory, language and reasoning

Genetic testing, which is done with a blood test, can confirm a diagnosis.

How is Huntington's disease managed?

There is currently no cure or effective treatment for Huntington's disease. It is usually managed by a team that includes a doctor, neurologist, psychiatrist, dietitian, social worker and palliative care specialist.

Management options may include:

A person with Huntington's disease may need assisted accommodation when they start to struggle with daily activities and self-care.

The best way for someone with Huntington's disease to keep well is by keeping physically and mentally active. You can also maintain your mental health through mindfulness or meditation.

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

Sometimes people with Huntington's disease do not notice their symptoms progressing. It can also be difficult for family and carers to understand what is happening. Support services are also available to help carers.

Can Huntington's disease be prevented?

If you carry the gene for Huntington's disease and are planning a pregnancy, talk to your doctor or a genetic counsellor about prenatal genetic testing or pre-implantation genetic diagnosis.

It is best to have genetic counselling before considering a pregnancy, so you understand all your options and their implications.

You can find more information in this booklet from the Centre for Genetics Education.

Resources and support

There are different Huntington's support organisations in each state and territory:

NSW Health Centre for Genetics Education provides a Huntington disease and genetic testing booklet. It outlines genetic counselling and testing, research and FAQs.

Government agencies may provide funding and other support services:

Learn more here about the development and quality assurance of healthdirect content.

Last reviewed: September 2023


Back To Top

Need more information?

These trusted information partners have more on this topic.

Top results

Huntington's disease - Better Health Channel

The symptoms of Huntington's disease usually, but not always, first appear when the person is approaching middle age.

Read more on Better Health Channel website

Huntington's Disease - Brain Disorders A-Z - Brain Foundation

Huntington's Disease is a genetic disease that causes emotional, cognitive & motor disturbances. There is currently no cure for Huntington's.

Read more on Brain Foundation website

Huntington disease

Read more on NSW Health website

What we’re doing about rare diseases | Australian Government Department of Health and Aged Care

Rare diseases are life-threatening or chronically debilitating conditions that affect a small percentage of the population. Rare diseases are complex and often need special treatments. Find out what we’re doing to help affected Australians.

Read more on Department of Health and Aged Care website

Speech pathology

Speech pathologists are university trained professionals who work with people of all ages to diagnose, manage and treat communication and swallowing problems.

Read more on WA Health website

Dementia - Brain Disorders A-Z - Brain Foundation Australia

The term ‘dementia’ is used to describe deteriorating intellectual function that can occur as a result of various neurological disorders.

Read more on Brain Foundation website

Genetic counselling

Genetic counselling may be recommended for people who have a history of hereditary disorders. Find out when genetic counselling can be helpful and what to expect.

Read more on Pregnancy, Birth & Baby website

Dementia - different types - Better Health Channel

Dementia is more common in people over 65, but it is not a normal part of ageing.

Read more on Better Health Channel website

Events that aren't epilepsy - Epilepsy Action Australia

Photo Courtesy Element5 Digital Seizures usually involve temporary changes in behaviour and movement

Read more on Epilepsy Action Australia website

Dystonia - Brain Disorders A-Z - Brain Foundation Australia

Dystonia is a neurological movement disorder that causes muscles in the body to spasm involuntarily. There are many types of dystonia.

Read more on Brain Foundation website

Healthdirect 24hr 7 days a week hotline

24 hour health advice you can count on

1800 022 222

Government Accredited with over 140 information partners

We are a government-funded service, providing quality, approved health information and advice

Australian Government, health department logo ACT Government logo New South Wales government, health department logo Northen Territory Government logo Queensland Government logo Government of South Australia, health department logo Tasmanian government logo Victorian government logo Government of Western Australia, health department logo

Healthdirect Australia acknowledges the Traditional Owners of Country throughout Australia and their continuing connection to land, sea and community. We pay our respects to the Traditional Owners and to Elders both past and present.