I was diagnosed with Huntington’s Disease (HD) last fall.
I knew something was horribly wrong with both my body and my mind during the last couple of years. So, I was grateful to get a diagnosis in New York City at the Weill Cornell Huntington’s Disease Center of Excellence in November of 2023.
I won’t say I wasn’t shocked when I got this news, in fact I was devastated. But I will say I have a degree of comfort in knowing that every one of my symptoms, which ranged from acute anxiety and severe unexplained depression – including suicidal thoughts and actions – to erratic body movements, have been explained with my HD diagnosis.
HD is an inherited and fatal brain disease, which has been compared to having ALS, Parkinson’s and Alzheimer’s diseases all at once. My genetic counselor believes I inherited HD from my dad, who likely had undiagnosed HD symptoms for most of his adult life and who tragically committed suicide many years ago.
My diagnosis comes after the passing of my sister, Kat DeVeau, who lived in Mexico and who was diagnosed with HD last summer. Kathie passed away from HD last year, right before Christmas.
I am posting this to let friends and colleagues know about my condition and to help raise awareness of this rare disease that affects approximately 500,000 people around the world.
I am also posting to thank Linda Jedidian Merchant and Rich Merchant, two angels in Massachusetts who have helped me get through the first stages of HD, and Molly Mason Drummond, an angel in Mexico who helped my sister navigate through later stages of the disease.
I know firsthand some of the horrors that Huntington’s caretakers can experience and witness. On behalf of me and my family, I am forever grateful to you all.
