AN INSPIRING Troon grandmother is acting to raise awareness of Huntington’s Disease after learning her grandchildren might inherit it.

Barbie Short, 70, supports her daughter-in-law, Marie who has lived knowing she carries the Huntington’s gene since she was 18. Barbie has now learned her two teenage grandchildren have a 50 per cent chance of developing the illness.

Marie carried the gene from her father who died of Huntington’s, as well as her brother. She also has two sisters in care suffering with the condition.

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, changes to thinking processes and a deterioration in physical control. This includes jerky, uncoordinated movements and the loss of ability to walk, talk, eat, and drink.

Barbie, a retired specialist nurse, describes the disease as having dementia, Motor Neurone Disease and Parkinson’s disease all at the same time.

She is now reaching out to various organisations acrossAyrshire to host a You, Me and HD talk to help break down the stigma that sur rounds Huntington’s disease and leaves many families feeling isolated and misunderstood.

With Huntington’s now very close to home for Barbie, she is doing all she can to get people talking more about the incurable disease. Barbie told the Ayr Advertiser series: “There is so much really good research going on that I’m hoping if my grandchildren have inherited the gene, there is hope for them in the future, that there will be treatment and management that they can do in the future. There is a lot of research going on at the moment.”

Speaking of her grandchildren, Barbie added:“They are aged 16 and 15. They are aware their mother has the gene, and their aunts and uncle had the gene. It’s a hard thing to explain because you live with it as a family. It’s the elephant in the room.

“Marie didn’t tell anyone, but we knew obviously as Duncan’s parents.

She didn’t want the wider family to know until she had told the children.

She didn’t want them to become known as the people who have Huntington’s.

“It’s quite a shocking thing to be told that someone you know has a horrible disease that they’re going to die of. It’s bound to change your feelings towards them.

“I’ve never asked them if they’d like to be tested, and Marie has told me it’s up to them and they can talk about it whenever they’re ready to talk about it.”

Barbie also stressed the problems young people have knowing they might carry the illness. She said: “It’s a dreadful thing to take in. Do people go off the rails and decide they’re not going to university, live every day and do what they want or do they say I’m just going to disregard this and say they’re not going to get symptoms for ages? You’ve got to think your way through that.

“The trouble is people tend to get this when they’re at an age when they’ve got children, you’re working, you’ve got a mortgage. Young people who may inherit Huntington’s are looking at parents and grandparents who have suffered and they are frightened to go and get the testing and I can understand that.

“I do feel that my son has a lot on his plate. He doesn’t know if his children are going to develop this. He doesn’t know if his life is going to become symptomatic.”

Barbie has now joined 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 has also participated in running events to get out speaking to people in the community about Huntington’s too.

Barbie added: “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.”

To invite Barbie to give a presentation at your organisation, please email

You can also watch the You, Me and HD video, featuring Barbie,