Huntington’s disease is a rare and hereditary disorder of the brain which causes people to deteriorate physically, cognitively and mentally. Yet there is little awareness of the condition and its impact on families.
That’s why, to coincide with Huntington’s Disease Awareness Month this May, four charities, including the Scottish Huntington’s Association, have launched the Family Matters campaign to increase understanding and awareness and improve care for those affected.
The Family Matters survey – launched this month by the Huntington’s Disease Alliance – reveals that 78% of Scots with the disease found most people they told about the condition didn’t know what it was.
More than two thirds (68%) of Scottish carers also suspect that their loved one has been wrongly accused of being drunk or on drugs due to displaying symptoms of Huntington’s.
And it’s not just those who have the condition who are affected – 88% of family members who tested negative for the gene felt guilt or shame about relatives who do or who may have Huntington’s.
Team GB Olympic medallist and former double World Champion rower Sarah Winckless MBE and actor George Rainsford of Casualty and Call the Midwife are supporting the campaign.
Sarah, a former Team GB rower who made history as the first woman umpire of the Oxford-Cambridge boat race last month, is Patron of the Scottish Huntington’s Association and an avid campaigner for Huntington’s disease families.
Huntington’s is in Sarah’s family, and she has tested positive for the faulty gene that leads to the disease herself.
“I believe this last year has given many of us an idea about what it means to be isolated or alone,” she says.
“When a family is navigating this disease, the lack of public awareness, and therefore empathy and understanding, isolates families and can make them feel they are facing the challenges alone.
“I am delighted that the Huntington’s Disease Alliance is working together to achieve the greatest impact we can.
“When people understood what was happening to mum, they were incredibly generous and supportive, adapting to what she needed so she was able to keep doing as much as she could for as long as she could. This helped us as a family and for that I am incredibly grateful.
“Through this campaign I want to increase the awareness of Huntington’s disease so others can have the knowledge and confidence to support their friends and neighbours.”
Alistair Haw, Chief Executive Officer of Scottish Huntington’s Association, which represents the Huntington’s community in Scotland, and one of the members of The Huntington’s Disease Alliance UK and Ireland, said: “The challenges faced by Huntington’s disease families have been hidden for far too long.
“This hereditary disease devastates families across the generations. Its physical and mental health symptoms are so severe that, in many cases, people are forced to live apart from their loved ones because such complex and demanding needs can’t be managed within the family home.
“Working lives are cut short, relationships break down, loved ones – including young people – become carers, and families are often isolated and misunderstood by their own communities.
“We are absolutely determined to right these wrongs. The Family Matters campaign will help to build greater understanding amongst the wider public and decision makers so that, together, we can work towards the lasting change that so many families both need and deserve.”
George Rainsford plays a doctor who loses his mother to Huntington’s disease and tests positive for the gene himself in BBC Drama Casualty. Having completed detailed research for his character, he said: “The impact of Huntington’s disease can be incredibly difficult for those living with the disease and for their loves ones.
“It has been fascinating, heartbreaking, life-affirming and humbling talking to Huntington’s disease families who have shared their experiences.
“I am supporting the Family Matters campaign to raise awareness of Huntington’s disease, so that the public understand not only how devastating the disease can be but also to celebrate the amazing strength and positivity that some families with Huntington’s have.”
The Family Matters campaign also invites those who have experience of Huntington’s to contribute pictures, words and thoughts to a shared digital community space called the Living History Project.
Four poignant short films sharing the stories of families living with Huntington’s will also be included on the Family Matters website to raise awareness of the disease.