Families from across Edinburgh and Lothian who are impacted by Huntington’s disease (HD) gathered at a special event at Drummond Grange Nursing Home in Lasswade, Lothian.
They were joined by Colin Beattie MSP and staff for the unveiling of a bench to mark the 30th Anniversary of Scottish Huntington’s Association (SHA) and help to break the stigma that still surrounds HD.
There remains a widespread lack of awareness and understanding about the complex disease, leaving many families feeling isolated in their communities. The bench was gifted by members of SHA Edinburgh Lothian Family Branch who, five years ago, planted a tree in the same grounds to mark the charity’s Silver Jubilee.
Dina De Sousa, Chair of SHA Edinburgh Lothian Family Branch and trustee of SHA, said:
“Huntington’s disease, the thief that steals your body, your energy, your health, your family, your friends and the person you used to be. Don’t let it define you.
“We hope this bench will welcome many individuals to have a seat and contemplate the good things in life and bring positivity. It will also serve as a conversation starter about HD and raise much-needed awareness about this silent disease.”
Today, there are 1100 people in Scotland with HD and a further 6000 people are at risk of developing the incurable disease. Because it is hereditary, HD impacts upon entire families over generations rather than on individuals alone.
In Edinburgh and across Lothian, SHA is supporting 100 people who are living with HD, 50 unpaid carers and 40 children.
Colin Beattie MSP, Midlothian North & Musselburgh, said: ‘I was delighted to be invited to unveil the commemorative bench at Drummond Grange Nursing Home. Scottish Huntington’s Association is an important charity for people with Huntington’s disease. It was a pleasure to meet so many people involved with SHA and I wish them all the best.”
Drummond Grange Nursing Home provides specialist care for people with long-term illnesses such as Huntington’s disease and multiple sclerosis.
Scottish Huntington’s Association is the only charity in Scotland dedicated exclusively to supporting HD families. Its lifeline services, including a network of HD specialists, financial and wellbeing guidance and youth advisors, make the difference between families coping and not coping.