Living with and advocating for Huntington’s disease

Written by Jenna Woodard

Sponsored by PTC Therapeutics

Hi, my name is Jenna Woodard, I am 23 years old, and I have Huntington’s disease (HD). I am also the secretary and a youth mentor for Huntingdon’s Disease Society of America National Youth Alliance and an ambassador for the Huntington’s Disease Youth Organization (HDYO), residing in Albany, New York.

May is Huntington’s disease awareness month and it’s time the world knows our stories. Read below to learn about my experience.

My mom explained HD as an incurable and genetic brain disorder.

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. I felt lost, numb, and scared but most of all, angry. Angry at the world for this disease’s existence and angry at my absent father for passing it down, especially without warning. As someone with no knowledge of HD, I have no clue about the typical testing process, so at the time I was unaware I would also hold anger over being told something so serious, accidentally.

At 18, I was tested in the neurology clinic at a world-renowned hospital. The doctor’s lack of bedside manner took a heavy toll on me. I reached out to my father, and he was not helpful either. The only thing I knew for the first two years of my diagnosed life was to ignore it like my father. This meant I suppressed every fear and question about HD. I never even mentioned it in therapy, just that I was positive. Suppression only lasts for so long, so after those two years, the feelings started to present themselves. I was worried about becoming a mother and passing this along and being a sick parent. All I ever wanted was to be a mother, I felt like my chance at that had been taken away. I had two inpatient stays for my mental health, and I became more reckless and impulsive over time, draining my savings account, quitting my job to travel, and doing adrenaline-inducing activities. I craved the feeling of being alive because I was so unsure when I no longer would be.

I wasn’t dying. My life wasn’t over.

After struggling for what felt like years, I met the incredible staff at my local Center of Excellence. For the first time in my diagnosed life, I wasn’t just a positive or negative result. I wasn’t dying. My life wasn’t over. My doctor hugged me after each visit, and even tighter on days I told her I was “fine.” Being treated like an actual person was such a different experience than even a normal doctor’s office. Every staff member from the receptionist to social workers, to doctors, know your name and face. Not only that, but they all care so much.

The HD community is beautiful.

They connected me to a support group via Zoom, which was also new to me. I didn’t know people in my area were affected too. I finally wasn’t alone. The support groups are run by the most incredible social workers who genuinely want to help you feel better. It opened my eyes to the community for the first time, and it was beautiful.

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 secretary and a youth mentor for the National Youth Alliance (NYA) and an ambassador for the Huntington’s Disease Youth Organization (HDYO).

My biggest priority for HD is advocacy.

Since then, I have tabled a booth at several types of events such as farmers markets and bake sales. I also host an annual kickball tournament each year and do social media fundraisers to help donate to the cause. My biggest priority for HD, however, is advocacy. I went into this disease blindly and it scared me—no one should have to go through that. I believe the more educated people are, the less they will have to worry. Then they can focus on finding their people in the community and having extra shoulders to lean on.

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. It’s hard to see light in the darkest places but each friend I made was a match, navigating me through this disease.

My biggest advice for anyone, sick/diagnosed or not—find your people, let them be your light.

To learn more about Huntingdon’s Disease Society of America National Youth Alliance and support Huntington’s  Disease Awareness Month, visit www.HDSA.org

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