A grandmother is speaking out about Huntington’s disease (HD) in support of families, including her own, who live with the condition.
Barbie Short, 70, from Ayrshire, 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.
Now Barbie, a retired specialist nurse, is reaching out to church groups, organisations and workplaces in Ayrshire to host a You, Me and HD talk to help break down the stigma that surrounds Huntington’s disease.
“Huntington’s disease devastates families across the generations, yet it isn’t often talked about. I’ve learned a lot more about it since my son Duncan met Marie, who is now my wonderful daughter-in-law. Marie lost her father and her brother to Huntington’s disease, and two of her sisters are now in later stages of HD and are being looked after in care homes.
“Marie knows that she too will develop symptoms, she just doesn’t know when. Her two children, my grandchildren, may also carry the gene.”
The symptoms of Huntington’s disease are complex and severe. They typically begin to emerge between the ages of 30 and 50 and include mental health problems, mood swings, 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.
“It’s important to me that I support not just my loved ones but the many other families across Scotland who are living with HD,” said Barbie.
“I’m very inspired by Marie, who fundraises and is a trustee with Scottish Huntington’s Association. In December, Marie will receive MBE at Buckingham Palace in recognition of her commitment to volunteering and her determination to change the lives of people living with Huntington’s disease. I couldn’t be more proud of her. There’s great hope that research will bring better treatments for future generations but there’s so much that we can do to improve lives today.
“This summer I took part in the charity’s My Zen Run challenge, completing my first 5k run, to raise funds. People will have seen me running through Troon in my Scottish Huntington’s Association t-shirt; it was a great way to start conversations about the disease with passers-by who all seemed very interested in what I was doing and why.”
Scottish Huntington’s Association is the only charity in Scotland dedicated exclusively to supporting people and families impacted by HD. It 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 Barbie and her 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 campaign has been made possible thanks to a £5000 grant from the James Tudor Foundation.