Families from across Edinburgh and Lothian who are impacted by Huntington’s disease (HD) will gather at a special event at Drummond Grange Nursing Home in Lasswade, Lothian, on Thursday, 9 May 2019.
They will be joined by Colin Beattie MSP, HD specialists and guests 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. Even today, there remains a widespread lack of awareness and understanding about the complex disease, leaving many families feeling isolated in their communities. The bench is a gift from 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.
The plaque engraving will read:
Scottish Huntington’s Association
Celebrating 30 years of dedicated service.
With hope for a better future for families affected by Huntington’s Disease.
9th May 2019
HD is a hereditary disease that causes changes to muscle control and thinking processes, and can lead to long-term mental health issues. The average age of onset is between 33 and 45 and people with HD may eventually lose the ability to walk, talk, eat, drink and make decisions for themselves, leaving many needing 24-hour care. Children of an HD parent have a 50/50 risk of developing the disease, for which there is still no cure.
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.”
In Edinburgh and across Lothian, SHA is supporting 100 people who are living with HD, 50 unpaid carers and 40 children. 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.