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New guides equip young people to cope with Huntington’s disease

Families living with the degenerative neurological condition Huntington’s disease (HD) now have a full range of resources to help their children understand the condition, whatever their age.

The Scottish Huntington’s Association Youth Project (SHAYP) now has in place a suite of information for parents and children specifically tailored to the needs of coming to terms with what is a complex and life changing condition.

Designed and produced by the team ‘Living with Huntington’s disease; A guide for Young People Aged 8-12 and13+’ have been specially created for young people whose parent, or an extended family member has HD.

These are backed up by a new book written by HD advisors ‘New things at Max’s house: A story about Huntington’s disease’ and the charity’s online learning package HD Routes. This is a bespoke, interactive tool that young people can use, alongside their Specialist Youth Advisor, to help navigate the many complex issues that HD creates in their lives.

SHAYP works one-to-one to support around 200 young people at risk of HD and also organises group events and activities across the country.

‘We now have in place easy to access, accurate and trustworthy HD information that is written in simple, easy to understand language that children can relate to,’ said SHAYP team leader, Kirsten Walker.

‘It can be overwhelming for young people when a parent or family member is diagnosed with HD. Iis a relatively little known condition and the impact of finding out that it is in the family can come as a real shock.

‘We believe that it is really important to talk openly about HD and we now have the tools to do this more effectively than ever before.’

SHA is the only charity in the country that supports families living with the condition through a team of HD specialists and a financial wellbeing service, as well as the youth project.

HD is a complex neurological condition with symptoms that typically begin to develop between the ages of 30 and 50. 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 along with mental illness. Those impacted by HD may eventually lose the ability to walk, talk, eat, drink, make decisions and will eventually require 24-hour care. It is also hereditary with each child of those diagnosed at 50% risk developing the disease. There is currently no cure.

It is estimated there are around 1100 people living with HD in Scotland and between 4000-6000 potentially at risk.

‘While the booklets are specifically designed for children and young people, they will also be a great resource for professionals and other adults looking for accurate information, written in a simple easy to absorb language,’ said Kirsten.

The publishing of these booklets was made possible through a grant from Big Lottery Fund Awards For All.

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