The head of one the country’s leading neurological support services has written a book, and if it’s published all his royalties will be donated to his charity.
John Eden, chief executive of the Scottish Huntington’s Association, first novel Fifty Percent? is the story of three women from three generations who are impacted by one secret, Huntington’s disease (HD).
He is now bidding to get it published through Amazon Kindle Scout but needs enough people to vote for it before they will considering selling it online.
The story is told from the perspective of Beth, a young woman who lives in Paisley with her husband, David and children Gemma and Alan. Her life is transformed by her mother’s diagnosis of Huntington’s disease and the gradual realisation of what this will mean for all of them. The novel also captures how Beth’s extended family is impacted.
‘I have always wanted to write a novel and last year when I turned fifty, I decided, if not now, then when? Writers are often advised to write what they know and while I don’t have a personal experience of HD, over the last seventeen years of working for the SHA I have been moved by its impact on the individuals and families I have supported. I also know just how much lack of awareness contributes to the challenges people encounter and wanted to do something to help change that,’ said John.
‘All I need is for people simply to vote for the novel and if enough people support me it could be published and all the sales of the book will be donated to the charity.’
The SHA supports families living with HD through a team of specialist nurses, their world leading youth support service and a financial wellbeing service.
HD is an incurable genetic brain disorder that usually starts between the ages of 30 and 50 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 progresses those affected will need 24 hour 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 chose to base the story in the late nineteen eighties, in Scotland, when there was little support available and before the gene that causes Huntington’s Disease had been identified. It gave me an opportunity to really show how the stigma and secrecy that has surrounded HD affected those living with it,’ said John.
‘It is a book about ordinary families, the emotional fabric that binds them together, but which can also be easily torn. It is about how any family might face a life changing illness.’