Scottish Huntington’s Association is the only charity in Scotland that exists solely to provide support to people living with Huntington’s disease (HD). Scottish Huntington's Lothian provides the specialist service in Edinburgh and the Lothians.
HD is a devastating, progressive neurological illness. A child who has a parent with the gene that causes the illness has a FiftyFifty chance of inheriting the disease. HD changes the way that people have control over their movements, causing constant uncontrollable movements, problems with balance and coordination, loss of speech and loss of the ability to swallow food and liquid safely.
Huntington’s disease also causes problems with the person’s ability to think and reason. Memory, concentration and skills all become impaired, making them not able to continue their role in their job and in their families.
To compound these immense problems people with HD change. They are no longer the person they once were. They frequently become moody and irritable, withdrawn or angry and lose the ability to care about the feelings of those around them and for family it is this loss of the person which is the greatest tragedy the illness visits upon them. These changes in personality and behaviour are sometimes joined by mental ill health, which further deepens the terrible impact of the disease.
Devastating, relentless, destructive and terrifying are all good words to describe Huntington’s disease, but they really fail to capture the horror that families living with this illness can experience every day.
Scottish Huntington's Lothian
Clinical Genetics Dept, WGH, Crewe Road South
Edinburgh EH4 2XU
Tel: 0131 537 1058
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