Research project will help those affected by Huntington’s disease

Clinical psychologist Dr Sarah Gunn has been awarded nearly £2 million to advance her work in the field of Huntington’s disease. 

Huntington’s disease (HD) is an inherited condition which gradually affects movement, thinking, emotions, and eventually leads to early death. Physical symptoms typically begin between the ages of 30 and 50, although emotional and cognitive difficulties may start much sooner. 

Around 8,000 people in the UK live with the condition which can have a serious impact on mental health. People who carry the HD gene expansion may experience depression, anxiety, irritability and suicidal thoughts, and their family and caregivers can also be affected. 

Now, thanks to the Career Development Award from the Wellcome Trust, Dr Gunn, from the University of Leicester’s School of Psychology and Vision Sciences is aiming to tackle the emotional challenges which come with a diagnosis. 

She will lead a major research project designed to better understand how HD affects mental wellbeing and what can be done to improve support. 

Dr Gunn, who already co-leads the Leicester Huntington’s Disease Network (LHDN), said: “The challenges around Huntington’s Disease are not well understood and many individuals and families affected struggle to get the right mental health support. There’s also a lack of clear pathways to improve care and support systems. 

“I hope to change that by working closely with individuals and families affected – those who have a lived experience of HD. My goal is to create new, practical resources and guidance that can be used by families, healthcare professionals, and researchers. These tools will help shape future research and lead to real-world improvements in how HD mental health is understood and supported—both in the UK and internationally.

“Our goal is simple but vital – to make the world a better, more supportive place for everyone affected by Huntington’s.”

Neurogenetics Professor Flaviano Giorgini from the University, who studies the genetics of neurodegenerative diseases and is part of the European HD Network, congratulated Dr Gunn on her award. 

He said: “Dr Gunn’s expertise in this area of HD makes her thoroughly deserving of this prestigious award. I look forward to working with her on this important project to help those with this debilitating disease and their families when they need it most.”

Gemma Harverson carries the faulty gene that causes Huntington's disease.

The 30-year-old, whose mum Hilary was diagnosed with HD when she was just 14 years old, only decided to go for the test a few years ago and was dealt the devastating news that she too will develop the same condition.

She has watched her mum’s health slowly decline over the years and says she knows this is likely to happen to her too. 

“Mum is 65 and at the end stages and it’s been incredibly hard to watch. Watching her deteriorate feels like looking into a mirror of my future self. Mum is non-verbal now and bed bound with elements of dementia. Although she still recognises family, she doesn’t remember a lot. She is shut off from the world.

“I’ve been living with her diagnosis for a long time and now I too have one. It’s often a struggle to cope. I have good days and bad days. 

“My mental health has been hugely affected by it. I’m hypervigilant so every little thing such as forgetting a name, dropping or bumping into something, becomes a potential symptom. It affects me forging a relationship with anyone because at what point do you tell them you have HD? I’m lucky that my employer knows and I can talk openly about it but specific mental health support for those dealing with HD just doesn’t exist. 

“Living in the shadow of HD has had a massive impact on my mental health. Despite being under mental health services, I've faced a lifelong struggle to access meaningful support. I hope for a time when mental health care consistently understands and supports people affected by HD, so no one has to feel as lost as I have.