Growing up, Samantha knew nothing about Huntington’s disease or how it impacted the people she loved. It was only a chance remark by a relative that started the conversation that led Samantha to discover that she too is at risk of having the faulty gene that causes the disease.
Samantha, 23, said: “I’ve only known for about 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.
“A while back I spoke to an HD Specialist about having the genetic test and I’m keen to go forward with it. My sister Claire, 21, has decided that it’s not for her just now, she doesn’t see any benefit in finding out at the moment and I respect her decision. I’m also looking forward to meeting other young people from HD families through SHA’s youth service, and we have a Zoom call set up so I can do that soon.
“Mum’s starting to have some symptoms now, just small movements, but is doing OK. She’s much more open about talking about it now. Sadly, we lost our gran to coronavirus last year and I think that has given us a real motivation to live our lives as best we can, doing what we can to help one another and other people affected by Huntington’s disease.
“That’s why I’m so keen to fundraise for SHA, I want more people to know about the charity and the work it does to support families. I don’t want Huntington’s disease to be a taboo subject in my family any longer, and Claire and I have roped in my best friend Danielle to join us for our latest challenge, The Big Walk 2021.
“It’s really good, I’m working from home right now and the Big Walk gets me out of the house every day to do something positive. We need to do 10,000 steps a day to reach our target and so far we’re on track.
“For now, I’m focused on the positive, hoping for a good test result, and feeling optimistic that one day there will be a treatment or cure for Huntington’s disease.”
To find out how you can join Samantha and all of our wonderful walkers on SHA’s Big Walk, please visit http://bit.ly/3mJohsG