A student from Auchterarder who lost her mum to Huntington’s disease has spoken out about the impact of the rare neurological condition on families.
Sarah Mitchell (17) was devastated by her mum Natalie’s passing 18 months ago when she was aged just 55.
Now in an effort to increase people’s understanding of HD Sarah, who studies at Perth College UHI, has joined Scottish Huntington’s Association as a volunteer youth ambassador to support other young people and boost research funding.
Huntington’s disease is a complex condition - caused by a hereditary faulty gene - with symptoms that typically begin to develop between the ages of 30 and 50.
Coming to terms with her loss was made even more difficult for Sarah because pandemic restrictions meant that for a long time she hadn’t been able to visit her mum in the care home where she lived.
Natalie needed 24-hour care because of her symptoms.
As the disease progresses, people develop uncontrolled movements and lose the ability to walk, talk, eat, drink or swallow.
Mental health symptoms include depression, anxiety, personality changes, mood swings and, in some people, psychosis.
The disease also damages cognition (thinking processes), leading to dementia and an inability to make decisions or plans.
The dreadful toll on individuals and their loved ones is compounded by the reality that each child of someone with Huntington’s disease has a 50/50 risk of also having inherited the faulty gene that causes the incurable condition.
“I was only seven when mum went to live in a care home. So I can’t really remember a time when she was well,” Sarah explained.
“I have photos to jog my memory and I know that, from what everyone tells me, mum was great fun and had lots of friends.
“She was very funny and would laugh a lot. Even when she was really ill, my dad could always make her laugh with some funny story.
“Mum had been looked after in care homes for 10 years when we received a call during lockdown to say that her health was getting worse.
“Over the next couple of months mum’s condition didn’t improve and we began to realise what was coming.
“I was struggling to cope because I couldn’t see her so my dad got in touch with the Scottish Huntington’s Association to tell them what was happening.
“I’ve been supported by the charity’s Youth Service for a long time and I know the specialist youth advisors there really well. My specialist youth advisor kept in touch with me every couple of days.
“Whether it was a five minute phone call just to check in or an hour-long video chat, it made a huge difference.
“We would talk about mum, ways to look after my mental wellbeing, how I was getting on at school, anything that was worrying me.
“My specialist youth advisor was also there for me when mum died, helping me to cope and understand.
“Now that some time has passed, I think I’m doing okay.
“I’m working part-time, studying at Perth College and looking forward to my second year on the professional cookery course.
“I’m ready to share my experiences with other young people growing up in Huntington’s disease families. I want them to know that I understand what they’re going through.”
Scottish Huntington’s Association chief executive Alistair Haw said: “We are extremely grateful to Sarah for volunteering as a youth ambassador.
“Despite living with the terrible loss of her mother, Sarah is determined to do what she can to help other young people whose lives are impacted by Huntington’s disease.
“Scottish Huntington’s Association is here for everyone in the Huntington’s disease community. Now, with rising numbers of families turning to us for support, we are determined to drive forward our mission to ensure every family, regardless of where they live in Scotland, has access to the specialist services they desperately need.”
See hdscotland.org for more information.
