“Wow, that’s horrible!” she says, staring at me with the same ‘stunned sympathy look’ everyone does when I explain HD. I take a quick breath, and with a sense of pride and vulnerability, I prepare to delve deep into myself yet again.

“Having Huntington’s isn’t ideal, but I am staying positive. For so long I have let HD tear my life apart, but not anymore. I am going to fight this!” Her stare turns to disbelief as I become more animated, the momentum building up inside me.

“I have to be a symbol. Not only for myself and my family, but I have to show everyone that I will not let HD beat me. I will squeeze every last drop out of life and never look back.

Huntington’s is part of me, but I will never let it define me…”