HDSA: Huntington’s Disease Society of America is a non-profit organization dedicated to improving the lives of everyone affected by 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
HDBuzz: Co-founded by Dr Ed Wild and Dr Jeff Carroll, this site reports the latest Huntington’s disease research news (without the jargon!)
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 summer reading!
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 main 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. There are currently more than 200,000 Americans at-risk of inheriting the disease.
-- Katie O’Brien, Inside the O’Briens
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!