By Lakshini Mendis
This review first appeared in the Scientista Foundation blog
In her new novel, Inside the O’Briens, the New York Times best-selling author of Still Alice, Lisa Genova, presents a moving portrayal about a family struggling with Huntington’s disease (HD).
HD is caused by a faulty gene that leads to the progressive breakdown of brain cells, which results in its hallmark symptom, chorea (uncontrollable dance-like movements). It is known as a ‘family disease’ because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. About one in every 10,000 people has HD, but one in every 1,000 is touched by the disorder, whether they are at-risk of inheriting it, a caregiver, family member or friend. Currently there are about 900 families affected in Auckland.
The story centres on the O’Briens – Joe O’Brien, his wife, Rosie, and their four grown children, JJ, Patrick, Meghan, and Katie – who live in Charlestown, MA. The O’Briens are just another normal family, sibling rivalries and all, which make them very relatable. The difference is that Joe has HD. We follow Joe from his earliest symptoms, to his diagnosis, and get an insight into what living with HD is like. We see how it affects his job in the Boston PD, and the ramifications (both positive and negative) his diagnosis has on his family.
Given that the faulty gene causing HD was found in 1993, ‘at-risk’ individuals can now choose to find out their gene status by taking a genetic test. We see the O’Brien kids, especially Katie, the baby of the family, grappling with this complex choice. It is not a decision that many of us have to consider in our early 20s, but Genova raises and explores some poignant considerations. Is the constant anxiety of not knowing better than being confirmed gene-positive? What happens if you are gene-positive? Do you choose to marry and start a family, given the risk of passing on the gene to your own kids?
Genova, who holds a PhD in Neuroscience from Harvard, effortlessly educates her audience about the science and genetics behind HD, without the complexities of a clinical textbook. It is one of the reasons I love this book.
The other reason I found this book a riveting read is testament to Genova’s storytelling capabilities. Genova really captures the human essence of being a part of an HD family, and gives us a window into what this feels like. The O’Briens were so compelling… so real! I found myself worrying with the O’Briens, crying with the O’Briens, feeling their pain and going on the same journey with them. I’m sure their story will resonate with many HD families across the world. However, because at its core, this story is about family, resilience, and love, it is relevant to all of us. I highly recommend it for your winter reading!
“Every breath is a risk. Love is why we breathe.”
— Katie O’Brien, Inside the O’Briens
May is Huntington’s disease awareness month… educate yourself here:
• Huntington’s Disease Association (Auckland) Inc:
Provides support for those living with HD in Auckland, by educating the community, providing the right support services, and furthering research to manage and cure HD
• HDYO: the Huntington’s disease Youth Organization site has tons of information about the disease and resources to help those with juvenile HD or with a parent who has HD (HDYO NZ is currently being set-up and could use your support!)
• HDBuzz: Co-founded by Dr Ed Wild and Dr Jeff Carroll, this site reports the latest Huntington’s disease research news, without the jargon
About the Author
Scientista’s co-Editor-in-Chief, Lakshini Mendis, is doing a PhD focused on how the human brain changes in Alzheimer’s disease at the Centre for Brain Research in Auckland. She is passionate about good science communication and changing the stereotype of women in STEM. She also writes for HDBuzz. When she’s not working, you can usually find Lakshini curled up with a good book, spending time with family and friends, or exploring somewhere new. Find her musings on Twitter here!