Gillian’s story

My late Mother had Huntington’s disease and I inherited the gene, which means I will go on to develop the condition too. This also means my three beautiful daughters have a 50% risk of inheriting the condition which is something I think about a lot.

My Mum was diagnosed in 1999 and learning that it is progressive, incurable and hereditary, was totally devastating for me and my family. Thankfully, from the beginning Scottish Huntington’s Association was there to support my Mum as they helped to get her the specialist support she needed.

Her Huntington’s was very advanced by the time she was diagnosed. She was extremely underweight, had slurred speech, difficulty swallowing and severe involuntary movements, making her wheelchair-bound. My mum’s HD specialist helped us find the right support and information so we could make the right choices about her care and access the equipment to improve her quality of life.

At the time they supported not only my Mum, but also myself and my siblings. They offered us information, counselling and directed us to support groups. I’m very lucky to still have no symptoms, but I have an HD Specialist who checks in on me regularly. I can contact them any time for help or advice, not only for me, but for my daughters. I am so reassured that the help and support will be there for me and my family when we need it.

It is thanks to this support I decided to become a volunteer fundraiser for Scottish Huntington’s Association. I wanted to give back to the organisation that helped my family and do everything in my own power to help other families with Huntington’s.

I’m now on the board of the charity representing families across Scotland. I’m absolutely delighted Benson Wood and Co have chosen Scottish Huntington’s Association as their new charity partner.

I know together we can make great things happen for a very deserving community!