Huntington's is a lethal neurodegenerative disease with no treatment and no cure. Genova’s latest book Inside the O’Briens explores the impact a man’s diagnosis has on his family and how each of his children deal with the fact they have a 50/50 chance of inheriting the disease.
Genova told The Huffington Post Australia she chose to focus on Huntington’s because so many of us have either not heard of the disease, or have no idea what a cruel, devastating disease it is.
“I’m hoping to create urgent attention and compassion. I chose Huntington’s disease because while most people are familiar with Alzheimer’s, many people don't know much about Huntington’s," Genova said.
“The family in this book are living with Huntington’s. It’s a multi-generational story because the disease is genetic. If your parents have it, every child has a 50/50 chance of getting the disease. Often symptoms don’t appear until after the age of 35, so by that time many people have already had kids and passed the disease down or not. So there is no cure and no treatment.”
Genova’s book Still Alice was made into an award winning film starring Julianne Moore who won an Oscar for her portrayal of Alice; an academic who finds herself, aged 50, in the rapid downward spiral of early on-set Alzheimer’s. Originally self-published, Still Alice went on to become a bestseller selling more than 100,000 copies in Australia alone.
Genova now travels the world speaking about Alzheimer's and Huntington’s, traumatic brain injury and other diseases.
“Huntington’s is a dreadful disease. It involves uncontrolled movements including face twitching, arms swaying around, struggling to walk, slurring words. You have no control over your muscles. It’s very off-putting and strange to watch. People unfamiliar with the disease would think the person is drunk or on drugs. Eventually you can’t walk or talk or feed yourself. You become totally dependent on others for care. There is also obsessive compulsive disorder, rage, depression and apathy. It is one of the cruellest diseases,” Genova said.
“When I was at my first job out of college in 1993, I was literally down the hall from the people that discovered the mutation that causes Huntington’s disease and I remember thinking, ‘I’ve witnessed an historic moment. This mutation is the only cause of Huntington's. They are going to cure this disease.’ But 23 years later there is still no cure and no treatment.”
Genova said this is partly because Huntington’s is known as an ‘orphan disease,’ where drug companies are not motivated to solve the problem.
“Around 30,000 people in the US have Huntington’s and there are 5.4 million with Alzheimer’s. So if you’re a drug company you are more financially motivated to cure Alzheimer’s which is more complicated disease to solve. But if you can solve Huntington’s it’s likely that strategy can be useful for other neurodegenerative diseases such as motor neuron disease.”
Novels are always a powerful way to educate the world about topics that are unknown or terrifying. Inside the O'Brien's is a story about a Boston police officer who is diagnosed with Huntington’s and didn’t know it was hereditary -- he just thought his mother was an alcoholic.
“There is so much shame attached to the symptoms and the families affected become very alienated. My character, Joe O’Brien, has four kids. Now because the mutation was isolated in 1993, anyone can get a blood test and find out if they are going to get Huntington’s. But it’s a very bizarre question to be faced with early in life. Most of us don’t say, ‘Wait, I need to find out what I’ve inherited genetically from my parents.’ We don’t have that available to us. But for the Huntington’s community, they’re faced with this difficult question -- ‘Do I want to know, or not?’"
“The book is about finding hope in a hopeless situation. What’s inside you and what you have inherited. It’s about the humour and faith and traditions of your family, about trying to stay present and not get worried about a future that may or may not happen. It’s about a family resilience.”
While she was carrying out research, Genova got to know some families affected by Huntington’s and she was struck by the adaptability of the human spirit.
“People can find a way to live, even when they are constantly faced with dying,” Genova said.
At the time of writing Still Alice, Genova was working for bio-tech companies and, when she couldn’t find a literary agent, she self-published the book and sold it from the boot of her car.
“Ten months later, Simon and Schuster bought the book and now it’s allowed me to make a living and give me a financial reason to write my next book. Following the Still Alice movie, I realised what the movie and the book can create global conversation, deeply rooted in empathy and understanding. That could lead to social change that could drive the funding for research that we need to develop treatments an a cure. We’ve seen that happen with cancer and HIV, so it’s not impossible. If we take something out of the shadows and acknowledge it exists and needs an urgent solution, then it is achievable.”