HD Awareness Week

Is Huntington's disease (HD) Scotland's hidden illness?

Huntington's Disease Awareness Week takes place on 6th - 12th June 2011. Today 850-950 people have symptoms of this devastating hereditary neurological illness and around 5000 people live at high genetic risk of inheriting the gene that causes HD, yet the illness is almost anonymous in the Scottish population.


The Scottish Huntington’s Association (SHA) is the national charity that strives to improve the quality of life of families living with HD.

John Eden, CEO of the Scottish Huntington's Association says:

“There is no cure for Huntington’s disease yet and while we work closely with others to research potential clinical treatments for HD it is critical that we support families and focus on enabling them to enjoy a high quality of life. A diagnosis of HD is more akin to dropping a rock in a pond than a pebble; the ensuing waves can dramatically alter the landscape of family life.”

Huntington’s disease causes a critical area of the brain to atrophy and eventually die resulting in deteriorating muscle function. The characteristic presentation is an involuntary movement disorder, but far more problematic are the changes to speech and swallowing.

HD also impairs thinking processes and although different to Alzheimer’s disease, it progressively impairs thinking, learning and decision-making. Furthermore, HD causes changes to the symptomatic person’s mental health with depression and anxiety being particularly common. Each child who has a parent with Huntington’s has a 50% chance of inheriting the illness themselves.

John Eden, CEO, says, “Huntington’s disease is shrouded in fear and stigma. Families are very reluctant to talk about it because of the potential implications for their children, for their jobs and their long term financial security. People who have the gene that causes HD won’t get life insurance for example. The double tragedy of HD is the devastation that it wreaks and the secrecy and shame that often prevents people seeking help and has led to a tragic under recognition of the illness among our public services providers.

Monday 6th June 2011 sees the beginning of Huntington’s disease awareness week in Scotland.  The theme for awareness week, reflecting the 50/50 risk of inheriting the gene is FiftyFifty.


Please visit www.hdscotland.org for further information.

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