My name is Meghan Sullivan and I am a Face of HD. My father was diagnosed with HD when I was just 2, and so HD has been a part of my entire life. My family and I became HD advocates when I was just young, always participating in HD educational and fundraising events.

In the fall of 2006, at age 19, and a sophomore in college, I began noticing subtle symptoms that I knew were the tell-tale signs of HD. Of course I had grown up knowing that I was 50% at risk of inheriting the faulty HD gene, but never thinking that I would become symptomatic as a teenager. In March 2007, I was officially diagnosed with JHD. At first, I was very angry, and I quit college. But thinking about what my Dad would have wanted me to do, I went back to school and got my Associate’s Degree in May, 2008.

Since I could not be gainfully employed, I wanted to do volunteer work that would make a difference, especially in the HD Community. I started doing public awareness by sharing my story with civic organizations, politicians, scientists and researchers, doctors, nurses, physical therapists, and all kinds of students. By meeting all of these different groups of people, I felt empowered by speaking to them. It definitely put my diagnosis and life in a new perspective. I truly felt that I was making a difference in the world and it gave me a new purpose in my life.

Our local newspapers, as well as my college alumni magazine have interviewed me about living positively with JHD. I have also been the subject of several videos, chronicling my life with JHD. I even volunteered at the nursing facility that I am now a resident at. By touching so many people, I am thankful that I am giving a “face” to HD.


 Share this story on Facebook