A new advice forum specifically designed for carers living in Huntington’s disease (HD) families has been launched.
Set up by the only charity in the country supporting families living with degenerative neurological condition, the Scottish Huntington’s Association, the online forum provides out-of-hours help and advice for anyone who needs support with any aspect of the condition.
‘The needs of people living with Huntington’s disease are wide and varied; no two cases are the same. So, for carers who are looking for some support to help manage their own situation having the ability to call on a wide variety of people dealing with similar experiences 24 hours a day is a massive help,’ said SHA chief executive, John Eden.
The forum provides accurate information about all aspects of caring for someone living with HD. It is facilitated by an HD specialist from the charity and carers have the ability to network and share private messages to support each other in confidence.
The SHA offers support through a team of HD specialists, their world leading youth support and a financial wellbeing service.
HD is a complex neurological 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, make decisions or care for themselves requiring 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 between 4-6000 potentially at risk.
‘I would urge anyone with a direct interest in HD to register and get involved with the forum, the more people active on it the more valuable a resource it will be,’ added John
HD carers can access the new forum by contacting Isobel Darroch on 0141 848 0308 or register using the website hdscotland.org.