Scottish Huntington’s Association (SHA) was established in 1989 by families living withthe progressive, genetic, neurological condition, Huntington’s disease (HD). The charitywas established by families because, as with many rare diseases, there was a vacuumof support from health and social care services. It is the only charity dedicated tosupporting individuals and families with the condition, in Scotland. SHA currentlysupports 1,100 individuals who may be symptomatic, carers or young people with agenetic risk.
Huntington’s disease is a genetic condition, affecting children and adults, which causesprogressive neurological symptoms: impaired motor function (e.g. loss of speech andswallow), early onset dementia, mental illness. There is currently no cure and thecondition is significantly life-limiting. Although relatively rare, 1100 people in Scotlandhave this disease and another 5,000 live with the genetic risk (each child with oneparent who has HD has a fifty percent chance of inheriting it).
The consequences for individuals and their families living with the condition areimmense. It is still shrouded in secrecy; those affected often live in silence with profoundtragedy as the disease tears through one generation after another. Social isolation iscommon, marriages frequently fail under the strain of coping with one or, often more,severely ill people. Children frequently become carers for their parents, while cial strain are an almost inevitable consequence.
The Pixel Fund has generously supported our HD Specialist Service - a network of eight regional Huntington’s disease Specialist teams across Scotland who ensure the needs of individuals and families are understood by providing specialist assessment, ensure that person-centred support that is right for each individual is in place by acting as care coordinators, supporting other agencies and improving quality of support through training and education.
Our HD Specialists work with individuals over many years developing close working relationships. For those we support our HD Specialists are a valued and trusted source of expert information, advice and support.
“It is a privilege to be welcomed into the homes of our HD families and given the opportunity to help in whatever way we can!”
On behalf of Scottish Huntington's Association