Families impacted by the degenerative neurological condition Huntington’s disease (HD) gathered at the Golden Lion in Stirling recently.
Organised by the Scottish Huntington’s Association (SHA), their Carers Conference focused on sharing experiences and looking at new ways of helping families cope with living with HD.
HD is a complex condition with symptoms that typically begin to develop between the ages of 30 and 50. It causes three main groups of symptoms: changes to thinking processes – a type of early onset dementia, loss of muscle control and involuntary movements which lead to loss of speech and swallow along with mental illness. Those impacted by HD may eventually lose the ability to walk, talk, eat, drink or make decisions and will eventually need 24 hour care. It is also hereditary with each child of those diagnosed at 50% risk developing the disease. There is no cure.
It is estimated there are around 1100 people living with HD in Scotland and up to 6000 potentially at risk.
SHA supports HD families through a national network of specialists, a world leading youth support team and its financial wellbeing service.
‘HD is life restricting, however, by enhancing coping mechanisms for carers, by making people aware of the impact on relationships, by having the information tools to hand, contacts to call and plans for a crisis in place we wanted to encourage those living with HD to live positively,’ said SHA chief executive, John Eden.
As well as sharing stories and carer experiences among the group, SHA staff from around the country were on hand to demonstrate how they help and support families around the country living with the condition.
If you would like more information about how to get involved with the Scottish Huntington’s Association either for support or to fund raise to help their work, contact 0141 848 0308.
Picture shows: SHA Support Development Officer Isobel Darroch with HD carers Sharon Mitchell and Margaret Moncrieff (R) at the Golden Lion Carers Conference.