Charity launches new young person’s guide to Huntington’s disease

The Scottish Huntington’s Association Youth Project (SHAYP) has launched a new range of literature designed to support children and young people living in families impacted by the degenerative neurological condition, Huntington’s disease (HD).

‘Living with Huntington’s disease; A guide for Young People Aged 8-12 and 13+’ have been specially created for young people whose parent, or an extended family member has HD. The booklets are designed to be engaging and easy to understand.

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.
Specialist youth advisor Grant Walker, said: ‘We are delighted to have produced these booklets and feel that they will go a long way to helping young people understand more about what Huntington’s disease is. The SHA believe that it is really important to talk openly about HD, to provide young people with accurate, age-appropriate information and to support the entire family.

‘Often when a parent or family member is diagnosed with HD, the impact on young people can be profound and they can be left overwhelmed. Not a lot of people know about Huntington’s disease, so it can sometimes come as a real shock to them. These booklets will help give an initial start to find out information about the illness, before engaging with SHAYP to build resilience and coping skills.’

The 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 require 24-hour care. It is also hereditary with each child of those diagnosed at 50% risk developing the disease. There is no cure.

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

Alex McMillan (8) from Glasgow, who is a young person actively involved with SHAYP, said ‘Visiting the printers to see the booklets being made was excellent. It was really exciting to see all the machinery and I thoroughly enjoyed my day. I really enjoyed the quality control at the end because I got to look through a magnifying glass. Having these new booklets will be great! My Mum has HD and sometimes it’s a bit scary – but they will help me to understand the illness more. I’m pleased I will get the very first copy.’

While the booklets are specifically designed for 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.
The publishing of these booklets was made possible through a grant from Big Lottery Fund Awards For All.

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