Huntington’s disease is an illness caused by a faulty gene in your DNA - the biological ‘instructions’ you inherit which tell your cells what to do. 

If you have Huntington’s, it affects your body’s nervous system – the network of nerve tissues in the brain and spinal cord that co-ordinate your body’s activities. Although there is, as yet, no cure, you can learn to manage symptoms more effectively to improve your quality of life.

Huntington's disease symptoms

The symptoms of Huntington’s disease vary widely between people. Even people in the same family may be affected differently. However, changes usually affect three main areas:

  • Movement (movements may happen that you don’t expect, while doing what you do want to do becomes more difficult)
  • Cognition (difficulties with planning and thinking)
  • Behaviour (changes in behaviour and personality)

Some facts about Huntington's

It's genetic

Huntington’s disease is not something you can catch; it is inherited. Every child conceived naturally to a parent who carries the Huntington’s gene has a 50% chance of inheriting it.

About the gene and symptoms

You can live with the faulty gene for years without symptoms, but if you do have it, at some stage you will develop symptoms. Doctors cannot tell you when this will be but it usually develops between the ages of 30 and 50.

It affects men and women

Huntington’s affects men and women. If you develop symptoms before the age of 20, this is known as Juvenile Huntington’s disease.

This animation has been created to inform you about Huntington's disease, it was co-created with Joe who is a member of the Huntington's disease community.  

How do I know if I carry the gene?

A genetic test can find out if you have the faulty gene but not everyone at risk decides to take the test and it may or may not be right for you.

Early signs you or your family may notice could include changes in personality; irritability; difficulty in learning new things or feeling clumsy. However, these symptoms could happen for many other reasons.

Some people who know they are at risk of Huntington’s spend time searching for the first signs that they are developing the disease. They may worry about simple things like dropping a cup, forgetting a name or becoming unusually bad-tempered. Most people do these things occasionally - whether at risk from Huntington’s disease or not - so you or the person you care for could be worrying unnecessarily.

If you are concerned about Huntington’s disease, write down all your symptoms and talk to your GP, who may refer you to a specialist (usually a neurologist) for tests. These tests could include a number of simple checks and possibly a brain scan, to rule out other, similar conditions.

The stages of Huntington's disease

We understand that after finding out about Huntington's or after a diagnosis, some people may want to know everything they might expect, but others might not.

Click on the below tabs - each of which will explain in further detail about symptoms in the different stages of Huntington's disease.

Early stages

Early symptoms may include slight, uncontrollable muscular movements; stumbling and clumsiness; lack of concentration and short-term memory lapses; depression and changes of mood and personality.

  • You may make movements that you don’t want to make (called chorea) while at the same time, it can become harder to make the movements you do want to make. For example, it might become more difficult to do up buttons or turn the pages of a book.
  • You may have difficulty with organising and planning.
  • You may feel and behave differently and you may become angry, irritable or frustrated.
  • You may find activities take longer or are hard to finish.
  • It may be harder to deal with new situations.
  • You may become more forgetful.

These are just a few of the possible symptoms - you may not experience them all or you may experience different ones.

There are many people living with Huntington’s who have greatly improved their quality of life by getting the right help and support.

Middle stages

Symptoms of the middle stage of the illness often revolve around changes in muscles and movement, although changes in behaviour may also become more significant and challenging too.

  • Your muscles are likely to start making involuntary contractions and become stiff and rigid.
  • This will cause your movements to slow down and your arms and legs may become clumsy.
  • You may start to experience changes in how you speak as forming words becomes more tricky. Speech therapy and certain equipment can help a lot with this.
  • It may become difficult for you to swallow, making eating difficult. Support from a dietician can help to make sure you keep your weight up.
  • Your behaviour may change as feelings of anger, frustration or depression become quite intense. This can be quite challenging for you and those around you. It doesn’t happen to everyone but it’s more likely to happen if you start to develop symptoms in your teens.

Everyone’s journey through Huntington’s is unique. You may not experience all these symptoms or may experience different ones or experience them at different stages. This means your care will need to be tailored to your specific needs and change and evolve as you do.

The right support at every stage can make a big difference, and we’re here to help.

Later stages

The nature of Huntington’s means that over a period of many years, the disease progresses until the end of life.

Later on, you may experience difficulties with:

  • weight loss and nutrition
  • speech and swallowing
  • movement and stiffness
  • communication

These are just a few of the possible symptoms - you may not experience them all or you may experience different ones. It is important to pay attention to the symptoms that are causing you and your family the greatest difficulty, emotionally or practically, at the time.

Sometimes the psychological and emotional sides of living with the disease are more of a problem than the physical side. It can be mentally difficult to cope with having a serious illness, and extremely frustrating not to be able to do more of the things that you could easily do before.

However just because things are likely to be difficult, this doesn’t mean there is nothing to be done. There are many different kinds of support and help that people with Huntington’s can try, to manage their symptoms and live as well as possible. Your carer and family may also need additional support, practically and emotionally.

In the later stages of the disease more care and support will be needed.