Huntington's disease - Symptoms 

Symptoms of Huntington's disease 

Juvenile Huntington's disease

Juvenile Huntington's disease (HD) is a less common form of the disease that starts to show in adolescents younger than 20 years.

Common signs in people this age are:

  • a rapid decline in school performance
  • changes in handwriting
  • problems with movement, such as slowness, stiffness, tremor or muscle twitching (similar to symptoms seen in Parkinson's disease)
  • seizures (fits)

The symptoms of Huntington's disease can include psychiatric problems and difficulties with behaviour, feeding, communication and movement.

People can start to show the symptoms of Huntington's disease at almost any age, but most will develop problems between the ages of 35 and 55.

Generally, the disease progresses and gets worse for around 10 to 20 years until the person eventually dies. Symptoms vary between people and there is no typical pattern.

Early symptoms, such as personality changes, mood swings and unusual behaviour, are often overlooked at first and attributed to something else.

Some people with Huntington's may refuse to accept their illness or the seriousness of it.

Behavioural changes

Behavioural changes are often the first symptoms to appear in Huntington's disease and can be the most distressing. These symptoms often include:

  • a lack of emotions and not recognising the needs of others in the family
  • alternating periods of aggression, excitement, depression, apathy, antisocial behaviour and anger
  • difficulty concentrating on more than one task, which causes irritability
  • short-term memory lapses
  • problems with orientation

A person with Huntington's may display a lack of drive, initiative and concentration that may make them appear lazy. This is not the case: it is just the way the disease affects their personality. Someone with Huntington's may also develop a lack of interest in hygiene and self-care.

Download the Huntington's Disease Association (HDA) factsheet on Behavioural Problems.

Psychiatric problems

Many people with Huntington's disease have depression – this occurs as part of the disease, not just as a response to the diagnosis. Symptoms of depression include continuous low mood, tearfulness and feelings of hopelessness.

A few people may also develop problems such as obsessive behaviours and sometimes schizophrenia.

Studies have shown that people with Huntington's disease are more likely to consider committing suicide, particularly near the time of diagnosis when symptoms are already apparent, and when the person starts to lose their independence. Find out how to get help if you think someone you care for is suicidal.

Movement problems

Huntington's disease affects movement. Early symptoms include slight, uncontrollable movements of the face, and jerking, flicking or fidgety movements of the limbs and body. These move from one area of the body to another and can cause the person to lurch and stumble.

As the disease progresses, the uncontrollable movements are more frequent and extreme. This may change over time so that movements become slow and muscles more rigid.

Feeding problems

People with Huntington's disease tend to lose weight despite having a good appetite. They can find eating tiring, frustrating and messy because the mouth and diaphragm muscles do not work properly, due to the loss of control.

Loss of co-ordination can lead to spilling or dropping food. Swallowing is a problem, so choking on food and drink, particularly thin drinks such as water, can be a common problem. You may be referred to a dietitian or a speech and language therapist if you find it difficult to swallow. In some cases, a feeding tube can be inserted. Read more about living with Huntington's disease.

For more information, download the HDA factsheet on Eating and Swallowing Difficulties.

Communication problems

Communication and cognition (perception, awareness, thinking and judgement) are affected by Huntington's disease.

People with Huntington's often have difficulty putting thoughts into words and they slur their speech. They can understand what is being said but may not be able to respond or communicate that they understand. Impaired breathing can make speech difficult.

Sexual problems

People with Huntington's disease can have problems with sexual relationships. This is usually a loss of interest or, less commonly, making inappropriate sexual demands. For more information on this, download the HDA factsheet on Sexual Problems.

End of life

In the later stages of Huntington's disease, the person will be totally dependent and need full nursing care.

Death is usually from a secondary cause, such as heart failure, pneumonia or another infection.

If you are approaching the end of your life and would like some advice and support, read our end of life care guide. Parts of it may be useful for people caring for someone who is dying, or people who want to plan in advance for their end of life care.

Page last reviewed: 23/10/2012

Next review due: 23/10/2014


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