Huntington's disease 


Huntington's disease

An expert explains the effects of Huntington's disease. Lee, 39, talks about his life with Huntington's and the importance of getting tested if you have a family history of it.

Media last reviewed: 22/11/2013

Next review due: 22/11/2015

Current research

Research is underway to find disease-modifying drugs and new treatments for the symptoms of Huntington's disease.

Exciting progress has been made in identifying potential ways of slowing down or halting the disease by "switching off" the faulty gene that causes Huntington's disease, for example.

To see what clinical trials on Huntington's disease are running right now, go to Huntington's disease - Clinical trials or visit the European Huntington's Disease Network.

Huntington's disease is an inherited disease of the brain that damages certain brain cells.

The disease damages some of the nerve cells in the brain, causing deterioration and gradual loss of function of these areas of the brain. This can affect movement, cognition (perception, awareness, thinking, judgement) and behaviour.

Early symptoms can include personality changes, mood swings and unusual behaviour, although these are often overlooked and attributed to something else.

Read more about the symptoms of Huntington's disease.

Huntington's disease was originally called Huntington's chorea, after the Greek word for dancing. This is because the associated involuntary movements of the condition can look like jerky dancing.

In the majority of cases, Huntington's disease is caused by an inherited faulty gene. However, in around 3% of cases there is no family history of the disease.

Read more information about the causes of Huntington's disease.

Treating Huntington's disease

There is no cure for Huntington's disease and its progress cannot be reversed or slowed down.

As the condition progresses, it may put a strain on family and relationships. Treatments for Huntington's disease aim to help improve or maintain skills used in daily living that can deteriorate over time.

Medication can manage some of the symptoms, such as irritability or excessive movement. Therapies such as speech and language therapy and occupational therapy can help with communication and day-to-day living.

Support is also available for families to help with decisions such as choosing a care home.

Read more information about how Huntington's disease is treated and living with Huntington's disease.

Generally, the disease progresses and gets worse for around 10 to 20 years, until the person eventually dies. In the later stages of Huntington's disease, the person will be totally dependent and will need full nursing care.

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

Who is affected?

Both men and women with a family history of Huntington's can inherit the disease. Symptoms usually start to appear during adulthood. 

Juvenile (children's) Huntington's disease develops before the age of 20. Only 5-10% of people with Huntington's develop the condition at a very young age, and the pattern of features may be different.

It was previously thought that 4-6 people in a population of 100,000 were affected by Huntington's disease. However, UK research carried out in 2012 has found the actual figure for those affected by the condition to be about 12 people per 100,000.  

It is thought the number of people who have the Huntington's gene and are not yet affected is twice that of those who have symptoms.

Page last reviewed: 23/10/2012

Next review due: 23/10/2014


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