A Genetic Lottery - a Column by Becky Field

Note: This column describes the experiences of the author’s father with tetrabenazine (often known by its brand name, Xenazine). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. My dad, who had Huntington’s disease, was moved…

My late father, David, never wanted to take the genetic test for Huntington’s disease, an illness that had already taken the life of his own father and his grandmother. He knew there was neither a cure nor a treatment to slow the disease’s progression. For many years, he…

My brother, Gavin, has Huntington’s disease. It causes problems with his cognitive, behavioral, emotional, and sensory skills. We’re fortunate to have support from a care adviser from the Huntington’s Disease Association, who has provided my family with strategies to help manage Gavin’s symptoms.

I met my first genetic counselor to discuss testing for Huntington’s disease when I was 22 years old and we feared my dad was at risk for developing the disease. He’d stopped working and driving at the time, and the counselor said his apathy and anxiety could…

My brother, Gavin, was recently diagnosed with Huntington’s disease. It has affected his sensory processing of vision, hearing, taste, smell, touch, and the proprioceptive, vestibular, and interoceptive systems. With Huntington’s disease, this sensory information becomes muddled, leading to many impairments and frustrations. Gavin has…

Five years ago, I grew increasingly concerned about my brother, Gavin. He was aggressive, angry, anxious, self-neglecting, and unemployed, and he appeared to be coping poorly with his Huntington’s disease. I reached out to our local Huntington’s care adviser, who explained that most of my brother’s emotional and behavioral…

I remember my family speaking openly about Huntington’s disease (HD) throughout my childhood. Our paternal great-grandmother had passed away before my brother and I were born, and our paternal grandfather passed when we were very young. Both had HD. Growing up, my brother and I heard stories about our…