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Huntington’s disease

huntington's disease gene path

What is Huntington’s disease

Huntington’s disease (HD) is a hereditary illness that causes damage to certain areas of the brain. This stops the brain and body from working as well as they used to, and affects a person’s movement, thoughts, behaviour and emotion. Symptoms can occur at almost any age but most commonly appear between 35 and 44.

There are different ways in which people are affected by Huntington’s disease. Everyone will be affected in different ways, some people have more problems with changes in their behaviour; others have more problems with their movements.

Huntington’s disease usually progresses slowly over a period of 15-25 years resulting in gradual physical, psychological and emotional changes and most commonly a combination of these. Often in the early stages of the disease the problems are associated with changes in the ability to co-ordinate information efficiently, so the messages being passed through the brain don’t always get to the right place.

Huntington’s disease is a genetic disease. Each child has a 50% chance of inheriting the gene that cases HD. People with the genetic change will most likely develop the disease, unless the die of other causes prior to developing the signs and symptoms. People who do inherit the genetic change will not develop the disease, neither will their children or their children’s children. This faulty gene can affect both males and females.

We know now what the genetic change is that leads to HD, it is possible to be tested to see if you have that genetic change. Usually you have to be 18 to have a test and it involves giving a blood sample. The process takes about 3 months and involves the chance to talk about any concerns with a genetic counsellor. Tests are carried out at Regional Genetics Centres which are based in Aberdeen, Dundee, Edinburgh and Glasgow.

HD is diagnosed when:

  • The person has a positive gene test for HD (from ages 18 and over)
  • The person has motor symptoms of HD (involuntary movements, problems with balance & coordination, changes in speech)

 

Huntington’s disease affects each person differently and some people with the condition may not have motor symptoms first, but instead have cognitive (thinking processes) changes or experience mental ill health. This can make diagnosis more difficult and it’s important to see a doctor who is experienced in the condition in order to get an accurate diagnosis. You can find out where to get specialist advice about diagnosis from your local Huntington’s Disease Specialist (staff employed by the SHA to give specialist support to people living with the condition) HERE.

For more information on what support is available you can check our National Care Framework, or contact your local SHA service. We also have various fact sheets and publications available.

 

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