Jenna Woodard is a Huntington’s disease (HD) patient and advocate from Albany, NY. She serves as an advocacy chair, youth mentor and ambassador for the Huntington’s Disease Youth Organization (HDYO).
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Hi, my name is Jenna. I am 22 years old, and I have Huntington’s disease (HD).
The story of my diagnosis is a bit different because I wasn’t tested at a Center of Excellence like most people. During a routine check-up with my pediatrician, I was accidentally told I was at risk for HD. At the time, I barely knew what having HD meant. My mom explained it as an incurable and genetic brain disorder I inherited from my father.
At 18, I was tested in the neurology clinic at a world-renowned hospital. The doctor’s bedside manner was awful and that took a heavy toll on me. I reached out to my father, and he was not helpful either. I was so lost and alone. I felt this way for two years until I met the incredible staff at my local Center of Excellence. They connected me to a support group via Zoom. When we finally met in person at a Gala, I was also introduced to members of the local chapter board and invited to join. A year later, I am the advocacy chair, a youth mentor for National Youth Alliance (NYA) and an ambassador for the Huntington’s Disease Youth Organization (HDYO).
After feeling lost for so long, this was a complete change for me. I was surprised how I felt welcomed and at home. The HD community has held my hand every step of the way and given me so many new friends and mentors. I went from hating this disease to feeling grateful for it. This may not have been a part of my plans, but HD sure has a plan for me.