14369 Huntingtons Disease

Overview

Huntington's disease is a rare inherited condition that damages nerve cells in the brain over time. It affects a person's ability to move, think clearly, and manage emotions. Symptoms usually begin in middle age and gradually get worse.

Huntington's disease is rare. It affects about 1 in 10,000 people in the UK.

It usually begins between the ages of 30 and 50, but it can also occur in children or older adults. Men and women are affected equally.

Symptoms

Common symptoms

• Uncontrolled movements, such as jerking or twitching (called chorea)
• Clumsiness and problems with balance
• Mood changes, including depression, anxiety, and irritability
• Difficulty concentrating and remembering things
• Trouble with swallowing and speaking
• Changes in behaviour, such as becoming withdrawn or impulsive

Symptoms in children

• Behavioural problems and poor school performance
• Stiffness in the arms or legs
• Seizures
• Clumsy movements and frequent falls

Symptoms in older adults

• Movement problems may be milder but still noticeable
• Memory loss and confusion can be more prominent
• Mood and behaviour changes may appear before movement problems

Causes

Main causes

• A mutation (change) in the HTT gene, which makes an abnormal protein that damages brain cells over time.
• This mutation is inherited from a parent. If one parent has the gene, each child has a 50% chance of getting it.

Risk factors

• Having a parent or sibling with Huntington's disease
• No other lifestyle or environmental risk factors are known

When to see a doctor

See a doctor urgently if:

• You or someone you care for has sudden, severe confusion or a significant change in behaviour
• New difficulty swallowing or frequent choking with meals
• Signs of a serious infection, such as a high fever

Book a routine appointment if:

• You have a family history of Huntington's disease and want to discuss genetic testing
• You are experiencing early signs like clumsiness, memory problems, or mood changes
• You need help managing symptoms or a referral to a specialist team

Diagnosis

A doctor will ask about your symptoms and family history, and carry out a neurological exam to check movement, balance, thinking, and reflexes. A genetic blood test can confirm the gene change that causes Huntington's disease.

Tests that may be done

• Genetic blood test
• Neurological examination
• Brain imaging (MRI or CT scan) to rule out other conditions
• Assessment of movement, thinking, mood, and daily function

What to expect at your appointment

If tests suggest Huntington's disease, you may be referred to a specialist clinic run by a neurologist. Genetic testing always involves counselling before and after the test, because the results can affect the whole family. It is okay to take time to decide whether you want to know your genetic status.

Treatment

There is no cure for Huntington's disease yet, but there is a lot that can be done to manage symptoms and support quality of life. A team of specialists – such as a neurologist, physiotherapist, occupational therapist, speech therapist, and counsellor – will work with you and your family.

Self-care at home

• Keep a daily routine to help with memory and mood
• Break tasks into smaller steps and use reminders or calendars
• Stay socially connected with family and friends
• Exercise regularly to keep muscles strong and balance better
• Plan ahead for safety at home to reduce falls and choking risks

Medical treatments

Medications may be used to help control movement problems, ease anxiety, reduce depression, and stabilise mood. These are prescribed by a specialist and need careful monitoring. Always discuss possible side effects and changes with your doctor – never adjust medicines on your own.

When is surgery considered?

Surgery is not a standard treatment for Huntington's disease.

Living with this condition

Living with Huntington's disease can be difficult, but with a good care team, support from family, and practical aids, many people continue to live meaningful, engaged lives for years. Some people use walking aids, communication devices, or help with eating as the disease progresses.

Lifestyle tips

• Do regular gentle exercise, like walking or seated stretches
• Stay involved in hobbies and social groups for as long as you can
• Avoid alcohol and recreational drugs, as they can worsen symptoms
• Get enough rest and keep a consistent sleep schedule
• Ask for practical help with daily tasks when you need it

Diet and exercise

A balanced, high-energy diet is important, especially if weight loss becomes an issue. If swallowing is difficult, a speech and language therapist can recommend softening food or thickening drinks. Physiotherapy helps maintain strength, balance, and mobility.

Mental health and emotional wellbeing

Depression and anxiety are very common in Huntington's disease, partly because of the way the condition affects the brain. Looking after emotional wellbeing is just as important as physical health. Talk to your GP about counselling or therapy. If you ever feel hopeless or have suicidal thoughts, please reach out for help immediately – you are not alone.

Prevention

Huntington's disease is genetic, so it cannot be prevented. However, people with a family history can have genetic counselling and testing to understand their risk. Some families may use preimplantation genetic diagnosis during IVF to avoid passing the gene to children, but this is a personal choice to discuss with specialists.

Screening programmes

Genetic testing is available for adults who have a family history of Huntington's disease, even before symptoms appear. This is a personal decision, and it is important to take time and get support before and after the test.

Complications

If left untreated

• Swallowing problems can lead to weight loss, dehydration, or choking
• Falls and injuries from poor balance
• Pneumonia from food or liquid going into the lungs
• Depression, meaning the risk of suicide is higher
• Loss of self-care skills and dependence on others

Long-term outlook

Huntington's disease is a progressive condition, which means symptoms eventually become more severe. However, with good medical care, therapy, and emotional support, many people live meaningful lives for many years after diagnosis. Research continues all the time, and there is real reason to hope for better treatments in the future.

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