An Edinburgh PhD student is speaking out about Huntington’s disease (HD) in support of families, including her own, who live with the devastating and incurable condition.

Ashley Buchan, 28, is joining Scottish Huntington’s Association (SHA) as a volunteer You, Me and HD speaker as part of the charity’s drive to raise awareness across the country.

She is calling on church groups, organisations and workplaces across Edinburgh and Lothian to host a You, Me and HD talk to help break down the stigma that surrounds Huntington’s disease and leaves many families feeling isolated and misunderstood.

Ashley, of Dean Village, said:

“Huntington’s disease is a genetic neurological condition that devastates families across the generations, yet it isn’t often talked about. It has been described as having dementia, Motor Neurone Disease and Parkinson’s disease all at the same time.

“My gran and my uncle both had Huntington’s disease, so I knew it was in our family but I don’t think I realised the full implications until my mum Susan was diagnosed in 2010. She is only 60 and is very determined but we’ve watched as the disease progresses and symptoms have started to emerge. We are, of course, very worried about her. I think the biggest change we see is mood swings – mum has a very quick temper now and her mobility is starting to be affected although she is still keen to get out and about to walk the dog.”

Today there are 1100 people in Scotland with Huntington’s disease and a further 5000 people at risk.

The symptoms are complex and severe. They typically begin to emerge between the ages of 30 and 50 and include mental health problems and a deterioration in physical control. This can cause jerky, uncoordinated movements and the loss of ability to walk, talk, eat, and drink. For many people, full time nursing care outwith the family home is needed as the disease progresses.

The terrible toll of HD is compounded further by the reality that children of an HD parent are at 50% risk of inheriting the faulty gene.

“I’m fortunate in that I don’t have the gene so I’m where HD in our family stops. However, it is important to me that I try to increase people’s understanding about the disease in support of my loved ones and the many other families across Scotland who are affected,” said Ashley.

“I honestly don’t know what we would have done without Scottish Huntington’s Association; the biggest support has been the specialist nurse who visits my parents. My dad Gavin has also started going along to the carers’ support group meetings, which he finds a great help.

“Volunteering as a You, Me and HD ambassador to raise awareness about Huntington’s disease is one of the ways that I can give back to the charity that has done so much for my family and countless others.”

In Edinburgh and across Lothian, SHA is supporting 100 people who are living with HD, 50 unpaid carers and 40 children. It is the only charity in Scotland dedicated exclusively to supporting people and families impacted by HD.

 The charity has grown from a small family network in 1989 to a national charity that provides world-leading services including HD specialists, a youth support team and a financial wellbeing service.

Chief Executive John Eden said:

“We are grateful to Ashley and her fellow You, Me and HD speakers for helping to make a real difference to how HD is understood in their communities. Their efforts are moving forward people’s awareness about the disease and how they can make a real difference to the lives of the families we support.”

To invite Ashley to give a presentation at your organisation, email elizajane@hdscotland.org. You can also watch the You, Me and HD video, https://hdscotland.org/lets-talk-about-huntingtons-disease/.

The You, Me and HD campaign has been made possible thanks to a £5000 grant from the James Tudor Foundation.