Two years ago, when I was researching my first book, Someone Else's Life, which centres on a teenager whose mother dies of Huntington's disease, I was invited to attend the Huntington's Disease Association's Annual General Meeting, where I was overwhelmed by the courage, hope and kindness of everyone I met. I'd been anxious that they'd see me as some kind of imposter - no one in my family has Huntington's - but instead they were incredibly grateful that I was writing about Huntington's, hopeful that my book would help raise awareness of this little-known illness, and generously told me their stories and gave me advice and support.
So this year I was thrilled to be able to give something back. Someone Else's Life is dedicated to people affected by Huntington's disease and their families, and I felt it only fitting that part of my advance for the novel should go to help those people - in particular the HDA - in gratitude for the help they gave me when I was researching my book, and in recognition of the amazing work they do for families with Huntington's disease.
One of the questions I most often get asked is why I decided to write about Huntington's disease in the first place, and the truth is it was almost by accident. For the purposes of my plot I began researching various genetic illnesses, and and stumbled upon Huntington’s disease, a hereditary condition with symptoms similar to the physical effects of Parkinson’s plus the mental decline of Alzheimer’s.
Having never heard of Huntington's before, I was especially surprised to discover that while there are around 6,000 reported cases in the UK there may actually be up to twice as many cases, because people often hide their condition, are mis-diagnosed, or even decide not to be tested.
Why? Because there is no cure.
This got me thinking. What would Rosie do?
What would I do, if I were at risk?
What would you do?
Suddenly, Huntington’s disease became the beating heart at the centre of my story, which consequently evolved into a much deeper, more emotional tale about secrets and lies, devastating ethical decisions, the complexities of family, and the enduring strength of love through any adversity.
Talking to and meeting with people affected by HD really made me realise that while the disease itself is devastating, it doesn’t define you. It’s how you choose to deal with it that counts – they’re some of the most inspiring and courageous people I’ve ever met. And last Saturday was no exception. The mood was overwhelmingly upbeat, there was much excitement and nervousness when one brave lady had all her lovely locks shaved off to raise money, and at the end of the day everyone got together and dressed up for an Oscars-themed dinner party - complete with a mini awards ceremony! The phenomenal Matt Ellison, who himself has Huntington's disease, won an award in recognition for his hard work in setting up the Huntington's Disease Youth Organisation - in between all his many marathons. Matt tirelessly campaigns for awareness and fundraises for the HDA and is a true inspiration.
Another "Oscar"winner was the engaging and charismatic Dr Ed Wild, who's tirelessly searching for a cure for Huntington's disease, whilst taking the time to run the HD Buzz website to explain all the medical-speak in plain language. He even posted live tweets during a lumbar puncture/spinal tap to reassure and encourage others to do the same (spinal fluid is extremely useful for HD research). There have been some extremely exciting developments recently, and hopes are high for a cure within the next few years.
And the HDA even kindly gave me an "Oscar" for writing the best book about HD - beating Ian McEwan's Saturday, which features a villain who has Huntington's disease.
The "Oscar" now sits in pride of place in my living room.
The HDA do an incredible job supporting families affected by HD - and to those families they're a godsend. Because the disease is thought to be so rare, and little heard of, there is very little government support, and even GPs don't always spot the symptoms or know how to deal with people affected. If understanding and awareness of HD grows, hopefully so too will support and funding for sufferers, their families, and the search for a cure.
I hope to help raise awareness and funds with Someone Else's Life, and in addition to the cheque, I will be donating £1 for every copy of Someone Else's Life sold at my launch events for my new book, Little White Lies, this week:
Thursday 17th October Waterstones Islington 6pm
Saturday 19th October Heffers, Cambridge 4pm
Do pop by if you're free, it'd be lovely to see you x
The Huntington’s Disease Association is a UK registered charity which exists to support people affected by the disease and to provide information and advice to professionals who support Huntington’s disease families. The HDA is financed through the generosity of trusts, foundations, the statutory and corporate sectors, branches of the HDA, members and friends. Find out more at hda.org.uk