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Gillian gets people talking about Huntington’s disease

Lanarkshire mum Gillian McNab is raising awareness about Huntington’s disease (HD) by sharing her story with people living in her community.

The 49-year-old, who discovered eight years ago that she had inherited the faulty gene that leads to the disease, has volunteered as a You, Me and HD speaker to mark the 30th Anniversary of Scottish Huntington’s Association.

Now she is calling on clubs and organisations across Lanarkshire to support her efforts to help overcome the stigma that surrounds HD and leaves many families feeling isolated and misunderstood.

Gillian, from Lanark, said:

“Huntington’s disease isn’t one of those conditions that’s often talked about and its symptoms, including mood changes and a lack of movement control, can be confused with other issues. For example, it’s common for people to think wrongly that someone with HD is drunk because their walking and speech are obviously impaired. That’s very upsetting for the person involved, and for their families.

“The widespread lack of understanding about HD makes life even more difficult, which is why it’s so important to reach out to community groups, organisations and workplaces so we can raise awareness about this very complex disease.”

The hereditary genetic condition attacks the brain and the symptoms typically begin to develop between the ages of 30 and 50. They include mental health problems and the loss of ability to walk, talk, eat, drink and make decisions. In many cases, 24-hour care is needed which means people with HD are unable to remain in the family home as the disease progresses.

Each child of a person with HD is at 50:50 risk of inheriting the condition, which impacts across generations of the same family. Today, there are 1100 people with HD in Scotland, and a further 6000 people are believed to be at risk.

Gillian, a nurse, said:

“I’m really happy to talk about my diagnosis and tell everybody who will listen. I’m in good health and love my life. I understand what’s ahead for me, and I feel empowered knowing what the future holds. It’s made me live every moment with gratitude.

“I’ve become involved in volunteering and fundraising because there’s great hope that better treatments will be available for future generations and there is so much that we can do to improve lives and help families today.

“I hope that by telling my story I will help to raise awareness about the disease, its impact on families and the vital work being carried out by Scottish Huntington’s Association.”

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 community network in 1989 to a national charity that provides world-leading services including a network of HD specialists, a youth support team and a financial wellbeing service.

Chief Executive John Eden said:

“Over the past three decades we have worked tirelessly to raise awareness about the impact HD has on the families of those affected, and although great progress has been made in lifting the stigma of the disease we want to really bring it out of the shadows during our anniversary year.

“This is great opportunity for people to help us make a real difference to how HD is understood at community level, it’s a chance to really move forward people’s understanding of the condition and make a real difference to the lives of the families we support.”

Anyone interested in joining Gillian as a  You, Me and HD volunteer speaker should email Liz McConnell elizajane@hdscotland.org or phone 07916062120.

You can also watch the You, Me and HD video, featuring Gillian, here.

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