Faces of HD

My first year out of college, I worked as a lab technician in a neurobiology lab at Mass General East researching drug addiction.  I was 22 years old in February 1993 when the scientists down the hall began celebrating.  They had just isolated the genetic mutation that causes HD.  I remember getting very still, the goosebumps on my arms, knowing I was witnessing a historic moment in all of neuroscience. Only one thing causes HD, and these scientists had just discovered it. “They’re going to cure HD,” I thought. It’s now 22 years later, and we still don’t have a treatment or cure.  I wrote Inside the O’Briens to create some much needed compassionate awareness and urgency about a disease most people know little about.

In doing the research for Inside the O’Briens, I read the scientific papers, clinical texts, and first-person accounts. I interviewed research scientists, genetic counselors, and neurologists. And then I came to know the real experts in HD– families affected by this disease.  Like no other neurological disease I know of, HD is truly a family disease. Originally, I thought this book would focus on a single character’s point of view—Joe O’Brien, a father diagnosed with HD. Very quickly, I realized this story had to be about the entire family, and it needed the perspective of Joe’s children, the generation living at risk.

I’ve come to know, admire, and love many people affected by HD. In addition to teaching me about symptoms, genetic testing, and disease progression, they’ve taught me about hope, resilience, courage, living in the moment, love, and gratitude, that there is more inside all of us than the DNA we inherit.

“Every breath is a risk. Love is why we breathe.” –Katie O’Brien, Inside the O’Briens