Huntington's Disease

Huntington's Disease (HD) is a hereditary illness which means it is passed through families. A child with a parent who has HD has a 50% chance of inheriting the gene that causes it. It is a neurological condition and is part of a group of diseases which affect the brain and central nervous system. In HD, specific brain cells stop working properly and then die. This causes three types of symptoms which affect how muscles work, how the person processes thoughts and information and it also affects mental health. In HD the person may develops jerky involuntary movements. They will also have less control over their movements. As the illness progresses the person can develop problems with swallowing and communication such as slowed or slurred speech.

 In HD the person will experience changes to the way they take in, process and remember information. The person's thinking becomes slowed down. Decision making becomes more difficult. Some people with HD become less able to make appropriate judgements about everyday situations. Most people with HD experience problems with planning, organising, concentration and switching their attention from one thing to another.

 Many people with HD experience problems with their mental health. Depression and anxiety are the most common difficulties and are often a reaction to the challenges caused by living with the illness. A very small number of people with HD may have more serious mental health problems. HD is a long-term illness and usually brings about very gradual changes over a period of fifteen to twenty five years.  

There is presently no cure for HD, but worldwide research is giving hope for the future. There is however a great deal that can be done to improve and manage symptoms, ensure that families living with the illness get the support they need and enable them to enjoy a high quality of life.

Effect on families

Huntington’s disease affects everyone in the family whether they have the illness or not. Most people with symptoms have to give up work early as do their carers resulting in huge financial pressures. Young people live with the psychological burden of their 50% risk and are frequently also young caregivers. Isolation and social exclusion are common in HD and families are often disadvantaged by the stigma that surrounds the illness. Accessing the right support from health and social services can be hampered because of the lack of general knowledge and understanding of HD.

Services in Scotland

There are specialist services in most areas of Scotland. These include Huntington’s disease management clinics, Specialist Nurses and youth services. The Scottish Huntington’s Association is a charity uniquely dedicated to providing support to people living with HD and information about its services is available on their web site


Huntington's Disease Youth Organisation

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