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Hope for families living with Huntington’s disease

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​A suite of resources means relatives will have access to all information they need

Families living with Huntington’s disease (HD) will now have access to a full range of resources to help their children understand the condition.

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

These resources 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 an 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.

SHAYP team leader, Kirsten Walker, said: “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.”

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

The Scottish Huntington’s Associaiton is the only charity in the country supporting families living with the condition through a team of specialists and a financial wellbeing service, as well as the youth project.

Symptoms of the illness typically begin to develop between the ages of 30 and 50. It causes three main groups of symptoms: changes to thinking processes, 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 estimated there are around 1,100 people living with HD in Scotland and between 4,000-6,000 potentially at risk.

 

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