Living with a parent or family member who has Huntington’s disease can be extremely difficult and young people often need specialist support to cope with the unique challenges this brings.
Many have taken on caring responsibilities from a young age while others are no longer able to live with their parent because at-home care is no longer possible. Some are grieving for loved ones and are worried about how their own health will be impacted in the future.
SHA’s Specialist Youth Advisors are here for young people from HD families all across Scotland from 8 to 25 years old. We provide the personalised support and information young people need and create opportunities for them to build new friendships and enjoy experiences that they might otherwise miss out on.
We work in partnership with families and the young people, which includes a growing network of volunteer Youth Ambassadors from HD families who provide peer-to-peer support, help to raise awareness about Huntington’s disease in their communities and share their experiences with potential funders of this vital service.
Our young people meet with and talk to their dedicated SHA Specialist Youth Advisor regularly to help them cope with the challenges they face at home and to prepare for what could lie ahead.
Meeting other young people your own age from HD families to learn together and share experiences helps to reduce feelings of isolation and open up new friendships.
Our annual Summer Camp and residential breaks are free of charge to our young people so they can enjoy some ‘me’ time with friends, build their resilience and develop coping strategies.
We bring our young people together for more localised activity sessions throughout the year so they can enjoy time with friends and our Specialist Youth Advisors.
Every young person has a different experience of how Huntington’s disease impacts their lives and the lives of their loved ones. We thank them for sharing their stories with us and each other.
Our digital and print resources have been developed by the Youth Service to ensure the information being shared is appropriate for the age of each young person.
Argyll & Bute
Grampian
Greater Glasgow & Clyde
Forth Valley
Highland
Lanarkshire
Tayside
Ayrshire & Arran
Dumfries and Galloway
Greater Glasgow and Clyde
Lanarkshire
Grampian
Highland
Tayside
Fife
Lothian
Scottish Borders
Information for parents
Youth Service Policies and Procedures
Resources for professionals
Training for practicioners
