Huntington's disease

Huntington's disease is an inherited condition that affects your nervous system.

Although Huntington's disease can happen at any age, symptoms often appear when you are aged in your 40s or 50s.

Huntington's disease is progressive, meaning it gets worse over time. While there is no cure, treatment can ease your symptoms. You can get support if you need it.

Huntington's disease can affect your brain and body.

Most people with Huntington's start having symptoms in middle age. However, some people may get symptoms before 20 years of age.

Physical symptoms

The most identifiable physical symptom is called chorea. This is rapid, uncontrolled movements of your:

• fingers
• limbs
• facial muscles

Mild movements can become more severe and uncontrolled as the disease gets worse.

Other symptoms you might get are:

• stiffness
• loss of fine motor skills, causing trouble with activities like writing
• changes in balance and coordination
• loss of control of swallowing and speaking
• fatigue (tiredness)
• loss of control of your bladder — you may become incontinent

Cognitive (thinking) changes

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

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

Emotional changes

Some emotional symptoms of Huntington's disease are:

• personality changes
• loss of drive and initiative
• impulsiveness
• obsessive-compulsive behaviour
• irritability and aggression
• loss of empathy
• changes in personal hygiene

You may also have mental health issues such as:

• anxiety
• depression
• mood swings
• psychosis

Huntington's disease is caused by a faulty gene. You only need to inherit the gene from one parent to get Huntington's disease.

If you have the gene, there's a 1 in 2 chance that you'll pass it on to your child.

If your child inherits Huntington's disease from you, it's possible they will have worse symptoms due to increased gene dysfunction.

This is especially true if the gene is inherited from their father.

Huntington's disease leads to the death of some of your brain cells. The parts of the brain affected are the frontal lobe and basal ganglia. These are responsible for:

• movement
• thinking
• personality
• emotions

If you have a blood relative with Huntington's disease, you can have a genetic test to see if you carry the faulty gene.

If you are at least 18 years old, talk with your doctor about having the test.

If your doctor thinks you might have Huntington's disease, they will ask about your family history and check for symptoms of the disease.

You may need to have an MRI or CT scan to look at your brain.

Your doctor may suggest other tests such as:

• 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 with a blood test can confirm a diagnosis of Huntington's disease.

There is currently no cure or effective treatment for Huntington's disease.

It's usually managed by a team that includes your:

• doctor
• neurologist (specialist in brain and nerve conditions)
• psychiatrist (specialist in mental health conditions)
• dietitian
• social worker
• palliative care specialist

Treatment options may include:

• physiotherapy, occupational therapy and speech therapy
• medicines to help with changes in your mood
• medicines to ease jerky movements and difficulty swallowing

The best way to keep well is by keeping physically and mentally active.

You can also do mindfulness or meditation to help maintain your mental health and wellbeing.

You may also be able to access:

• financial support through Centrelink
• respite care at home or in a residential facility

You may need assisted accommodation if you start to struggle with daily activities and self-care.

If you have Huntington's disease you may find it helpful to plan for the future.

This can be:

• financial
• legal
• care arrangements

Planning can give you a sense of empowerment. Talking openly with loved ones about having Huntington's disease and what may happen in the future can be a relief.

Sometimes people with Huntington's disease don't notice their symptoms getting worse. It can also be hard for family and carers to understand what is happening.

Support services for carers

If you're caring for someone with Huntington's disease, it's important to look after yourself too. Some tips for maintaining your wellbeing as a carer are to:

• focus on the relationship you have with the person you're caring for
• take time for yourself
• celebrate the small victories
• ask for help when you need it

In the later stages of Huntington's disease, you may have difficulty swallowing. This can lead to weight loss and a chance of choking.

You also have a higher chance of falls due to difficulty controlling limb movement.

If you lose control of your bladder function you may become incontinent. You may also develop dementia.

Huntington's disease is an inherited condition. If you or a close relative have Huntington's disease you can take steps to prevent having a child with the condition.

If you are planning a pregnancy, talk to your doctor or a genetic counsellor (Opens in new tab) about prenatal genetic testing (Opens in new tab) or pre-implantation genetic diagnosis.

This helps you to understand all your options and their implications.

You can find more information in this booklet (Opens in new tab) from the Centre for Genetics Education.

For further information, NDIS services and support groups, visit Huntington's Australia (Opens in new tab) or call 1800 244 735.

If you're in Victoria, visit Huntington's Victoria (Opens in new tab) or call 1800 063 501.

The Centre for Genetics Education provides a Huntington disease and genetic testing booklet (Opens in new tab). It outlines genetic counselling and testing, research and gives answers to frequently asked questions.

Government agencies may provide funding and other support services:

• The National Disability Insurance Scheme (Opens in new tab) (for people under 65 years old) — phone 1800 800 110
• Aged Care Assessment Team (Opens in new tab) (for people over 65 years) — phone 1800 200 422

You can also call the healthdirect helpline on 1800 022 222 (known as NURSE-ON-CALL in Victoria). A registered nurse is available to speak with you 24 hours a day, 7 days a week