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 knowing 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 life was incredibly limited so I felt the right support and information was vital 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.
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.