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.