Huntingtons Disease

Overview

Huntington's disease is a rare inherited brain disorder that damages nerve cells over time. It causes problems with movement, thinking, and mood.

No, it is rare. About 1 in every 10,000 people has Huntington's disease.

It affects both men and women equally. Symptoms often start between ages 30 and 50, although a juvenile form can begin in childhood.

Symptoms

Common symptoms

• Involuntary jerking or writhing movements (called chorea)
• Trouble with coordination, balance, and walking
• Difficulty swallowing and speaking
• Memory problems and difficulty making decisions
• Mood changes, such as depression, irritability, or anxiety
• Trouble concentrating or planning tasks

Symptoms in children

• Rigid and stiff limbs (instead of jerking movements)
• Seizures
• Behavioral problems and poor school performance
• Slurred speech and trouble with muscle control

Symptoms in older adults

• Symptoms may be confused with other conditions like Parkinson's disease
• Trouble with memory and daily activities may appear more prominent
• Involuntary movements may be less obvious than in younger people

Causes

Main causes

• A change (mutation) in a specific gene called HTT. This leads to the production of a harmful protein that damages brain cells.

Risk factors

• Having a parent with Huntington's disease. Each child of an affected parent has a 50% chance of inheriting the faulty gene.

When to see a doctor

See a doctor urgently if:

• If you or someone you care for has thoughts of self-harm or suicide, get help right away — call your local emergency number or go to the nearest emergency department.
• If there are sudden severe changes in behavior that could harm the person or others.

Book a routine appointment if:

• If you notice persistent problems with movement, memory, mood, or coordination that are affecting daily life.
• If you have a family history of Huntington's disease and have concerns about your own symptoms or risk.

Diagnosis

A doctor, usually a neurologist, diagnoses Huntington's by taking a detailed medical and family history, performing a neurological examination, and often ordering genetic testing to confirm the diagnosis.

Tests that may be done

• Genetic test (a blood test) to look for the faulty gene
• Brain imaging, such as CT or MRI, to see any changes in the brain
• A neurological exam to check reflexes, coordination, movement, and memory

What to expect at your appointment

Genetic testing is not done lightly. You will have counselling before and after the test to help you understand the results and their impact. Results may take several weeks.

Treatment

There is no cure for Huntington's disease, but treatment can help manage symptoms, maintain independence, and improve quality of life. A team of doctors, nurses, therapists, and social workers usually provides care.

Self-care at home

• Keep a daily routine to help with memory and staying organised.
• Use assistive tools like special cups, plates, or gadgets to make eating and daily tasks easier.
• Stay connected with friends and family through regular visits or calls.
• Plan for home safety, such as removing trip hazards and installing handrails.

Medical treatments

Medications may help with movement problems, mood changes, and behavioral symptoms. Your healthcare team will tailor any treatment to your individual needs. Never start, stop, or change a medication without talking to your doctor.

When is surgery considered?

Surgery is not a treatment for Huntington's disease.

Living with this condition

Living with Huntington's means adjusting over time. Many people use family support, therapists, and assistive devices to maintain independence for as long as possible. A team approach helps address changing needs.

Lifestyle tips

• Stay socially active and involved in hobbies you enjoy.
• Keep physically active with safe activities like walking, stretching, or chair exercises.
• Plan ahead for the future, including advance care decisions, with help from family and professionals.

Diet and exercise

A balanced diet and regular exercise can help keep muscles strong, maintain energy, and protect your overall health. If swallowing becomes difficult, a dietitian can recommend softer foods, thickened drinks, or other strategies to prevent choking.

Mental health and emotional wellbeing

Depression and anxiety are very common in Huntington's disease. It is important to talk to your doctor or a counsellor about how you feel. You are not alone, and support can make a real difference.

Prevention

You cannot prevent Huntington's disease if you inherit the faulty gene. However, genetic counselling can help you understand your risk and the options before symptoms appear, including reproductive choices.

Vaccines

There is no vaccine for Huntington's disease.

Screening programmes

If you have a family history, you may choose to have genetic testing before symptoms start. This is a highly personal decision with emotional, social, and medical implications. Discuss it thoroughly with a genetics counsellor.

Complications

If left untreated

• Difficulty swallowing, which can lead to choking or breathing food into the lungs
• Pneumonia (lung infection) from inhaling food or liquids
• Serious falls and injuries due to poor balance and coordination
• Untreated depression, which can lead to self-harm or suicidal thoughts
• Severe weight loss and malnutrition from involuntary movements and swallowing problems

Long-term outlook

Huntington's disease progresses over many years, but everyone's journey is different. With good medical care, therapies, and strong support, many people maintain comfort, dignity, and meaningful connections for a long time. Research is active, and there is hope for future treatments.

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