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Lisa Genova's new novel focuses on hope, not despair in family with Huntington's

06/03/2015 02:19 EDT | Updated 06/03/2016 05:59 EDT
TORONTO - Best-selling novelist Lisa Genova was a young college grad working as a technician in a Boston neuroscience lab in 1993 when a raucous celebration erupted in another laboratory down the hall.

There was good reason: researchers had finally isolated the mutated gene that causes Huntington's disease, one of humankind's cruellest disorders.

Genova, who went on to become a neuroscientist before turning to writing, knew she was witnessing a historic moment in the field. "And I remember thinking: 'Oh my God, they're going to cure this disease.'"

It was the memory of that eureka moment that led her to write about Huntington's in her latest novel, "Inside the O'Briens," continuing the theme of her previous three works of fiction, which focus on families affected by disorders of the brain — dementia, traumatic brain injury and autism.

"All my books are about people living with neurological diseases or conditions, who tend to be ignored, feared or misunderstood," says Genova, 44, whose 2007 debut novel "Still Alice" about early-onset Alzheimer's disease garnered best-actress awards for Julianne Moore in the title role of the film version.

"So Huntington's fits with that."

Despite the promise of that genetic discovery 22 years ago, there is still no treatment or cure for the inherited neurological disorder, which progressively destroys brain cells, leading to physical and cognitive deterioration and eventual death.

"Inside the O'Briens" (Simon and Schuster) is the story of a veteran Boston cop in his early 40s who is diagnosed with Huntington's and the devastating effects on his family.

For his four children, all in early adulthood, it is not just their dad they have to worry about: each child has a 50-50 chance of carrying the defective gene. Symptoms typically don't begin manifesting until between ages 30 and 50, although the disease does rarely show itself in children as young as five or in those in their 70s.

A DNA test will tell the siblings whether they, too, are doomed to develop the life-shattering disease — but do they want to know?

Much of the book focuses on the youngest O'Brien, Katie, who wrestles with the decision whether to face her genetic fate or live with the sword of Damocles hanging over her future.

"With all the people I've come to know with Huntington's, I can really appreciate that this is not a black and white or right and wrong question," says Genova, whose research for her novels includes speaking to affected families as well as experts.

For "Inside the O'Briens," that included discussions with B.C. genetic counsellor Alicia Semaka, who reached out to the writer to offer her expertise in helping families that carry the Huntington's gene after hearing the disease would be the subject of her next book.

"We spent a lot of time on the phone and through email. She was fantastic," says the Cape Cod, Mass., author, who writes while her three children, aged four to 14, are in school.

Genova, in Toronto recently to promote the novel, says the book is meant to raise awareness about the disease and the urgent need for research dollars to find effective treatments — and ideally a cure.

"Most people don't know what it is," she says of the disorder, which over time is marked by involuntary and often violent jerking of the head, neck and limbs; severe emotional swings; cognitive decline; and impaired speech and swallowing.

An estimated one in 7,000 Canadians, or about 5,000 people, have Huntington's, which has been described as combining the symptoms of Parkinson's, Alzheimer's and schizophrenia.

While Genova doesn't shy away from describing Huntington's inexorable effects — in fact, the book's unblinkered description of the disease is one of its strengths — "Inside the O'Briens" is anything but bleak.

"The story is about how to find hope in a situation that feels hopeless," says the author. "It's about how to be brave when you're totally vulnerable.

"It's about what's inside you that gets passed down through your family. In addition to your DNA, there's humour and tradition and faith, and how what's inside you can both destroy you and save you, depending on what it is and how you frame it."

Her next novel will tackle another cruelly debilitating and lethal neurological condition — amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease.

Doesn't Genova find it depressing writing about catastrophic disorders?

"I don't," she says. "There's a lot of heartbreak and tragedy ... And yet the overwhelming feeling I get from all of this is I feel so inspired, I feel grateful, I feel an acute appreciation for life.

"The people I've come to know are truly heroes in how they've taken their situation and chosen to be generous and share what they're going through, which is very private and personal and scary.

"And they're going to share it with the world in hopes of helping others feel less alone, in the hope of changing the way we treat people with disease and the hope of finding a cure."

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Online:

http://www.huntingtonsociety.ca

Follow @SherylUbelacker on Twitter.

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