I’ve only known about Huntington’s disease for six years now because it was something nobody in our family ever spoke about. I found out that my mum Shauna has Huntington’s disease, and her late sister also had it. It’s inherited from my grandad’s side of the family, he and some of his brothers had the disease too.
It was a lot to take in, I was only a teenager and I felt sick, I can still remember going to bed that night feeling as if my life was ending. I found lots of things on the internet about it being a neurological degenerative disease, the 50% risk of inheriting the faulty gene, and that it's almost always fatal. I didn’t understand the language, or anything about CAG repeats, and I wrote myself off.
Thankfully I found Scottish Huntington’s Association and started speaking to people who made more sense and understood that I needed the right information. It’s made such a difference to me, and my mum has had a lot of support from the charity too.
Until then I didn’t know how many people are affected by Huntington’s disease or how much the charity does to support them. Honestly, SHA has been phenomenal; the first time I spoke to someone, I felt the weight lift off my shoulders and I wasn’t worried about upsetting anybody with my questions.
- Samantha's Story
My dad Mark had Huntington’s disease and Mum cared for him really well at home for as long as possible. At the same time, she was raising me and my two older brothers, Logan and Morgan, while working as a nurse and studying for a degree.
When I was younger, I didn’t really understand that Dad was very ill. He had severe symptoms but I didn’t know him any other way so to me he was my dad and that’s how he was,
“Looking back, I realise how bad it was for him and how hard it was on my mum. We had carers coming in and out but eventually Dad went to live in a care home. By then I knew that we wouldn’t have Dad for long and he died in 2017 aged just 42.
I was about eight years old when I first began meeting up with Grant, my SHA youth advisor,” said Keir. “Knowing what Dad went through, it’s scary knowing that I’m at risk too so it’s good to have Grant to answer my questions, reassure me that I am doing OK, and just be there when I need him.
He’s helped me to learn more about Huntington’s disease, including what to expect, and he encouraged me to go to the annual summer camps. I’ve been seven times now and have just signed up as a SHAYP youth ambassador so I can support other young people.
I knew nothing about Huntington’s disease when we got together and we decided to get on with life in the hope that it would be a long time before any symptoms started. Now it seems to be progressing fairly quickly; friends who haven’t seen us for a while can be quite shocked by the changes in Lorraine.
Lorraine carries on with life and never complains. I really admire how she deals with what she has
The HD Specialists from Scottish Huntington’s Association really help. They understand what families are going through and make sure all the support and information is there for them.
- Kenny and Lorraine’s story