Supporting Young People Living with Huntington’s Disease

Across the North of Scotland, 14.6 per 100,000 people now have a diagnosis of Huntington’s Disease (HD) and show signs of the condition. The figure 36 years ago was only 9.94 per 100,000.

The prevalence in Northern Scotland is almost three times greater than reported elsewhere in Europe, North America, and Australia (5.70 per 100,000 people) and more than five times the estimated worldwide prevalence of 2.71 per 100,000 people.

Huntington’s disease is an inherited condition which causes the progressive breakdown of nerve cells in the brain which gets gradually worse over time and is usually fatal after a period of up to 20 years.

Each child of someone with the Huntington’s gene has a 50% chance of inheriting the condition – affected children can likewise pass the gene to their children.

Collaborative work involving scientists from the University of Aberdeen, NHS Grampian and the Scottish Huntington’s Association has led to improving the support to young people, as well as resources for parents who face dilemmas about how, when and what to tell their children about the genetic condition.

Dr Karen Keenan explained:

“Living with a parent who has a serious hereditary degenerative condition like Huntington’s disease (HD) can be extremely difficult for children and young people. Many witness the loss of a parent as the illness progresses, whilst also discovering they are at 50% risk of developing the disease themselves in adult life.

“Families with Huntington’s disease can face considerable stigma, there are higher rates of family breakdown, and often secrecy about its existence. Our research has been instrumental in identifying a need for age-appropriate information and support for children and young people impacted by HD, and a need for parental guidance about disclosure to children.

“Over the last two decades our studies have built an evidence base that has been used to inform support services for young people in Scotland and around the world, and has influenced training for health and social care professionals.”

Scottish Huntington’s Association Youth Service Lead, Grant Walker, said:

“The research carried out by the University of Aberdeen has helped to underpin some of our approach to supporting young people living with HD.

“We have a range of important new initiatives targeted specifically at young people including the recently launched suite of Tip Jar digital resources, created in partnership with our Youth Ambassadors. The new resources focus on helping young people to manage their money and address common questions such as applying for a mortgage, benefits and allowances, and planning for the future.

“While our summer camps and residential trips were paused during the pandemic, support continued through Zoom activities, video and phone calls. We are now once again meeting up with young people in person, have held an activity day and a residential trip and are looking forward to summer camp to bring our young people back together and reconnect with friends old and new.

“We have continued to build our team of voluntary Youth Ambassadors and have now trained 16 young people. They provide peer support and support the work of the charity by fundraising and building awareness about Huntington’s disease.”

The Scottish Huntington’s Disease Youth Service has lots of resources. Click on this link: Resources

Leave a Reply