Huntington’s disease

What are the symptoms of Huntington’s disease?

The symptoms of Huntington’s disease usually begin between the age of 30-50. These may include:

• Difficulty concentrating, or lapses in concentration

• Increasingly low mood or depressed

• Other changes in mood, including feeling irritable, angry or impulsive 

• An inability to control your movements, including sudden jerking or fidgeting

• Clumsiness or unsteadiness 

• Difficulty swallowing, speaking or breathing

What are the stages of Huntington’s disease?

There are 5 stages of Huntington’s disease. 

Preclinical stage

This is when mild, usually mood-related symptoms may appear. This is usually between the ages of 30-50. 

Stage 1: Early stage

Symptoms may become noticeable enough and the movement symptoms often become apparent. Huntington’s disease is usually diagnosed at this stage. Typically, daily activities aren’t affected but there may be issues with eating or sleep, and some tasks may seem more difficult.  

Stage 2: Early intermediate stage

A person with Huntington’s disease may be unable to continue with completely independent daily activities at this stage. They may experience difficulties with swallowing, speech and balance. Chorea, the involuntary movements that occur with this disease, often become severe at this stage. 

Stage 3: Late intermediate stage

At this stage, a person may need a lot of help and are unlikely to be able to live independently. 

Stage 4: Early advanced stage

A person with this stage will need substantial help. Sometimes this means moving to a facility that can help with daily living. 

Stage 5: Advanced stage

At the end-of-life stage, care will be focused on making life as comfortable and peaceful as possible. Patients may choose to spend their last moments in a hospice or at their home.

People with Huntington’s disease usually live for anywhere between 10-20 years after their first symptoms appear.

How common is Huntington’s disease?

8 in 100,000 people are likely to be affected by Huntington’s disease in the UK. It’s mostly seen in people who have a family history for the disease.

What causes Huntington’s disease?

The disease is caused by a faulty gene that causes parts of the brain to become gradually damaged over time. You’re usually only at risk of developing Huntington’s disease if one of your parents has the gene.

If a parent is positive for this faulty gene, they have a 50% chance of passing this on to children. Huntington’s disease displays something called ‘genetic anticipation,’ where with each successive generation, the disease presents at an earlier age.

A GP can refer you for genetic testing if you are concerned that you may have the gene. 

How is Huntington’s disease diagnosed?

If a doctor suspects that a person has Huntington’s disease, based on their examination and family history, a referral will be made to a specialist genetic testing centre. Here they can either confirm or exclude a diagnosis of Huntington’s disease.

How is Huntington’s disease treated?

There’s currently no cure for Huntington’s disease. But there are treatments available to help improve symptoms and make coping with the disease an easier process. 

These can include: 

• Speech and language therapy to help with difficulties feeding or with speech 

• Occupational therapy can help with daily tasks, which may become more tiresome and frustrating as the disease progresses

• Physiotherapy can often help with problems that develop as the disease progresses, such as changes to balance, coordination and movement 

• Medications such as antidepressants can help with symptoms of low mood, and antipsychotic medication can help with involuntary movements 

• Some people find that keeping active helps with both the mental and physical aspects of Huntington’s disease

What is juvenile Huntington’s disease?

Juvenile Huntington’s disease is when symptoms of Huntington’s disease develop before the age of 20. This is very rare. 

Usually, symptoms such as involuntary movements don’t occur in juvenile Huntington’s disease. Instead, you may notice that movements become slower and stiffer. Some people may develop symptoms of epilepsy.

What is the life expectancy for Huntington’s disease?

As Huntington’s disease is a progressive condition, the disease is usually fatal. Life expectancy is usually between 15-20 years from the onset of symptoms.

When should I speak to a doctor?

If you’re worried you may have some of the above symptoms, speak with a GP in the first instance – especially if you have a family history of Huntington’s disease.