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Angry, frustrated and battling with Huntington's

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This week (2-8 June 2014) is Huntington’s disease awareness week but how many of us actually know much about this genetic disease?

The Huntington’s Disease Association say that the condition is caused by a faulty gene that damages nerve cells in the brain. This damage gradually leads to physical, mental and emotional changes. These changes affect behaviour which could manifest as forgetfulness or the person living with Huntington’s getting frustrated and angry with things that wouldn’t have previously bothered them.

Huntington’s usually begins to affect people when they are between 30 and 50 years of age. As the symptoms are mild to begin with, many people continue to carry on with their lives as ‘normal’ for years after the onset of the symptoms.

It is a hereditary disorder that affects both men and women and there is a 50–50 chance of you inheriting the ‘faulty’ gene if one of your parents has the condition. There are genetic tests available that will usually show whether you have inherited the gene and there is lots of free advice and support available through the Huntington’s Disease Association regional care advisory service.

One person who has benefited from the support on offer from various agencies, including Bromford, is John* who really struggled to cope with everyday life after being diagnosed with Huntington's.

Bromford support worker, Anna Mitchell explained that when she first met John he was having regular accidents due to problems with his mobility. His health was suffering and he was neglecting himself and his accommodation. Personal hygiene was an issue for him and his care was non-existent.

John had been refused Employment and Support Allowance even though he was clearly unable to work. He was finding it really difficult to look after himself and he had been attacked and his flat had been broken into by somebody who had been targeting vulnerable adults.

In short, John was in crisis.

With the help of the Huntington’s Disease Association, the police, social services, Bromford and the Salvation Army, John has now moved into a new flat. He has full benefits in place helping to pay for the full care package that he needs.

The support that he has received has given John a new lease of life, he showers every day and wouldn’t dream of not wearing clean clothes. He has a bus pass and loves getting out and about; John says that thanks to the help he can “now enjoy his disability.”

*Name changed

Communication specialist - My days are spent telling stories, networking, copywriting, posting on social media and delivering training to colleagues - a bit of everything really! 

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