The power of telling the truth about your body

There is a quiet rebellion in telling the truth about your body, especially when the world would prefer you stay silent, polished, and palatable. When I was diagnosed with Huntington’s disease, I didn’t know how to talk about what was happening inside me. I had learned, like many of…

A committee of the European Medicines Agency’s (EMA) has recommended that the experimental oral medication pridopidine not be approved for adults with Huntington’s disease. The EMA’s Committee for Medicinal Products for Human Use (CHMP) recommendation will be reviewed by the European Commission, which has final say over therapy…

As the recent heat wave baked our city and much of the country, my family found itself reflecting on simple acts of kindness. Specifically, we focused on how important these things are to me and my wife, Jill, and our daughter, Alexus, both of whom are gene-positive for…

Huntington’s disease doesn’t give you a map. There is no itinerary, no neatly labeled stages that tell you when and where things will change. It’s a disease of uncertainty, one that rewrites its rules day by day, sometimes hour by hour. It doesn’t ask permission. It doesn’t give warning.

Early molecular changes in Huntington’s disease appear to be largely due to the loss of normal huntingtin protein function, not just the harmful effects of its mutated form, a new study reports. The scientists found that during nerve cell development, cells without huntingtin showed similar molecular-level disruptions as those…

Note: This column discusses suicide. Resources for help are listed at the end of the column. In the Huntington’s disease community, I’ve noticed that conversations about depression and suicide are often avoided or treated as taboo. Medical professionals sometimes warn families like ours that suicide may be an outcome…

Dear past me, I know you’re scared. I know your hands are trembling, not just from the involuntary movements beginning in your fingers, but from everything this diagnosis means. Huntington’s disease. You heard the words, but your brain hasn’t fully let them in yet. You’re still sitting in…

Children of people with Huntington’s disease are subject to more childhood trauma than their peers, contributing to increased psychological distress during adulthood, a new study reports. The researchers noted that while the symptoms of Huntington’s can manifest at any time of life, “their onset is usually around [the] age…

When I was a child, I never missed an episode of the television series “The Incredible Hulk.” I was fascinated by Bruce Banner’s struggle — how he tried to control the monster inside him as he turned green, his muscles bulging out of his clothes; how he fought…

I’ve stood in front of classrooms filled with bright-eyed medical students in their freshly pressed white coats, ready to learn the clinical details of Huntington’s disease. They take notes, nod along, and ask technical questions. But when I begin to speak not from a textbook but from lived experience,…