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

Darren Clark, 28, has joined Scottish Huntington’s Association (SHA) as a volunteer You, Me and HD speaker as part of the charity’s 30th Anniversary drive to raise awareness across the country. 

Now he is calling on church groups, organisations and workplaces in his home town and beyond 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 in their communities. 

Darren was born and raised in Irvine. He attended St Mark’s Primary and St Michael’s Secondary schools, and now works as a Sales Administrator at Impact Test Equipment in Stevenston.

He said:

“My family is affected by Huntington’s disease. It’s a genetic neurological condition that’s been described as having Motor Neurone Disease, Parkinson’s and dementia all at the same time. I lost my mum Dorothy to HD in July 2018, she was only 58 when she died. My grandpa and my uncle had the disease as well, and because the faulty gene is hereditary, there’s a chance that I will develop it too.

“For now, I’m living life to the full. I married my long-term girlfriend Robyn earlier this year, it was a wonderful wedding but bittersweet because Mum wasn’t with us on our special day. Robyn helped to care for my mum so she’s seen how the disease progresses. She is very supportive and has joined me as a volunteer speaker for Scottish Huntington’s Association to raise awareness.

“We want people to know just how awful this disease is, not just for the person who has HD but also for their family and the people who love them. I grew up knowing Mum was ill, and over the years it got worse as the HD symptoms progressed. Mum had to give up driving then started to walk less. It’s heartbreaking to watch someone you love being overwhelmed mentally and physically to the point where they are in a wheelchair and need 24-hour care.”

Today there are 1100 people in Scotland with Huntington’s disease and a further 5000 people at risk. Symptoms are complex and severe and typically begin to emerge between the ages of 30 and 50.

They include mental health problems, changes to thinking processes and a deterioration in physical control. This can lead to jerky, uncoordinated movements and the loss of ability to walk, talk, eat, and drink. For many people, full-time care outwith the family home is needed as the disease progresses.

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

Darren said:

“I haven’t been tested so I don’t know what’s ahead for me. For now, I’m happy living my life with Robyn, fundraising and speaking out to increase awareness.

“Scottish Huntington’s Association is a great support for my family, and volunteering as a You, Me and HD ambassador to raise awareness about Huntington’s disease is one of the ways I can give back to the charity.” 

Darren has been involved in a number of events in aid of SHA, raising thousands of pounds to provide lifeline services for HD families all over Scotland, including HD specialists, a youth support team and a financial wellbeing service.  He is also active on social media to increase awareness about the disease and the challenges faced by families living with HD.

Chief Executive John Eden said:  

“We are grateful to Darren and his fellow You, Me and HD speakers for helping to make a real difference to how HD is understood in 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.”  

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