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 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 is a massive help,’ said SHA non clinical service manager, Bob Bogle.
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 specialist nurses, their world leading youth support and a financial wellbeing service.
HD is an incurable genetic brain disorder that usually starts between the ages of 35 and 45 years. 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 and mental illness. As it progress those affected will need 24 care. It is also hereditary with each child of those diagnosed at 50% risk developing the disease.
It is estimated there are around 1100 people living with HD in Scotland and about 5000 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 Bob.
HD carers can access the new forum by contacting Isobel Darroch on 0141 848 0308 or via isobel.darroch.org.