'Let's talk about Huntington's disease' - University researchers help young people to open up

May is Huntington's disease (HD) Awareness month, set aside each year to draw attention to the neurodegenerative disorder which in Northern Scotland has increased by almost 50% over the last 30 years.

A recent study, led by University of Aberdeen academic and Huntington’s doctor, Prof. Zosia Miedzybrodzka, revealed that across the North of Scotland, 14.6 per 100,000 people now have a diagnosis of 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.

University of Aberdeen academics and NHS Grampian Huntington’s disease clinic staff are tackling Huntington’s disease by leading research to better understand and care for HD and taking part in international trials of drugs to slow the progression of the disease. The team works in close partnership with families and Scottish Huntington’s Association.

Researchers from the University have also worked with Scottish Huntington’s Association and local genetic service over a number of years to interview children and young people living with Huntington’s disease. This research highlighted a need to develop tools for supporting 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, who conducted the interviews, explains “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.”

As the world marks Huntington’s disease Awareness month, Dr Keenan says it is vital that young people are empowered to take a lead in conversations about HD. Their research findings have been taken on board by a number of charities which have continued to pioneer new ways to support young people affected by HD and to give them a stronger voice.

“The findings from our interview studies have helped give young people a voice in the global HD community and informed the development of some incredible youth services, such as the Scottish Huntington’s Association Youth Service and the Huntington’s Disease Youth Organization,” she added. “One recent development was the first ever Young Adult Virtual Congress held by HDYO in March 2021 - and again in 2022 - bringing together young people from across the world to share their personal stories, educational resources and research updates.

“In fact, HDYO is actually celebrating its 10th year supporting, educating and empowering young people impacted by Huntington’s disease. As well as developing age-appropriate information about HD specifically for children, teenagers and young people and rolling out its innovative Ambassador program, HDYO continues to develop its virtual programs including a new Research Video Series – in partnership with HD Buzz, videos which detail the latest news in research updates in an easy social media format and Breaking Down Barriers –a video series that addresses stigma around research and life impacted by HD.

More locally, 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.”

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