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New fact sheets increase Huntington’s disease understanding

New fact sheets highlighting help and advice for anyone diagnosed with the degenerative neurological condition Huntington’s disease (HD) have been launched.

The series of 15 two-page resources have been designed by the Scottish Huntington’s Association (SHA) as a comprehensive tool to increase understanding of the condition.

‘These are designed to offer quick snippets to give people diagnosed with HD a better understanding of what the condition is and how it is likely to affect them and are equally as relevant for other family members,’ said chief executive of the SHA, John Eden.

‘Information is power and the more you know about what you are dealing with and what help is out there, the better you can cope.’

The new fact sheets cover a range of every day topics that those living with the condition will alters their relationship with things they previously took for granted. From immediate issues that need to be addressed such as employment, keeping well and relationships, to longer term issues like financial planning and moving into long term care.

The SHA supports families living with HD through a team of specialist health and social care staff, their world leading youth support and a financial wellbeing service.

HD is an incurable genetic brain disorder that usually starts between the ages of 35 and 45 years. It causes three main groups of symptoms: changes to thinking processes – a type of early onset dementia, loss of muscle control and involuntary movements which lead to loss of speech and swallow and mental illness. As it progress those affected will need 24 hour care. It is also hereditary with each child of those diagnosed at 50% risk developing the disease.

It is estimated there are around 1100 people living with HD in Scotland and about 5000 potentially at risk.

‘Our specialists are there to provide one to one support for anyone diagnosed with HD and their family, but this new resources will provide HD families with quick and easy access to a summary of some of the issues they are likely to experience helping them manage their HD journey,’ added John.

The new fact sheets can be seen on the SHA website.

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