HDYou: Community Stories
HDYou Community Stories is a series dedicated to sharing stories from the HD community for the HD community. We are excited to include blogs to that program which will allow young people to tell their story through writing rather than through videos. Explore more HDYou Community Stories here.
The HDYou Community Stories is sponsored by Neurocrine Biosciences, Prilenia, Ferrer, Novartis, Teva Pharmaceuticals, Skyhawk Therapeutics, Roche, and the Griffin Foundation.
Navigating Testing and Finding Moments of Peace
Hi, I’m Abi, I’m 21 and I live in Newport Rhode Island and I work for a professional dance company in the area. I am a first generation American, and my family is originally from the Philippines.
My dad is gene-positive for HD, and we found out about 4 or 5 years ago. But I grew up familiar with the term because his mom was sick and, due to the lack of accessibility in the Philippines, was never formally diagnosed or tested. Since my dad’s diagnosis, it feels like every decision I’ve made is because of HD, whether it be about my future or my dad’s.
Why was it important for you to share your story and how did you pick a topic?
I realized recently that sharing even a part of my story is very therapeutic for me. It helps in detangling the thoughts in my brain, and if those detangled thoughts are relatable and help someone else then who am I to hide them? The topic of testing is one that is constantly on my mind, and a very personal one. The thought of having the choice to find out something so life-changing is a terrifying one. On one end, it is a privilege. I have avenues to go through if I were to decide to test, and people who would support me. It is also the gift of knowledge and insight as to what is happening in your brain and body. But on the other end, it is also a ticking bomb that, regardless of the result, will permanently change the trajectory of your life.
When did you first learn about testing for HD?
It was at the HDYO camp in 2024, I believe the first time was in a small group session. But what really stuck with me was a panel on testing, and a friend was on it who made the decision not to test. That was the first time I realized that being undecided was okay. That it’s okay to sit with the unknown, and that it should ultimately be your own choice and not influenced by the opinions of other people, even loved ones.
Where are you at in your personal testing journey? What has influenced this decision?
I am currently sitting in the boat of being undecided. I think finding out something so life-changing would be detrimental to my mental health. But because my job is so physical and requires me to be in complete control of my body and mind, I might want to change the boat I sit in. It’s hard to make that kind of decision, especially when you’ve seen family members deteriorate from this disease and the thought of “what if it’s me next” is constantly in the back of your mind.
These conversations can get heavy, what do you do if you ever feel like you are too focused on the what-ifs or deep in a testing research internet hole? How do you take care of yourself?
I like to remind myself that no matter what, life is a gift and it is meant to be lived. It is very easy to dig yourself into a hole with anything HD-related. And for a while it felt like digging that hole was the only way to live life. But it’s not, at least for me. There is sunshine and rain and trees to touch, and how are you going to experience all of that if you are in a pit in the ground?
I love my metaphors, but I am also being serious. Literally go touch a tree after reading this. So much of my self-care includes going and spending time outside or in a patch of sun. I also enjoy staring at the ocean, because it puts things into perspective. Note: it puts things into perspective, not fixes all my problems. But personally, it makes them easier to carry afterwards. Also, the ocean is just really pretty.
What advice would you share with people impacted by HD looking for more information or for a community?
I’m biased, but reach out or go to an HDYO event. I promise it’s so worth it. I actually didn’t want to go to my first HDYO event because I thought it would be just a bunch of people crying about HD. News flash, it is. But there is something so therapeutic about walking into a room of people who just get it, and you don’t have to do all the explaining and backstory talk. And don’t worry, there’s a lot of laughter and good times in the midst of those tears too.
The HDYou Community Stories is sponsored by Neurocrine Biosciences, Prilenia, Ferrer, Novartis, Teva Pharmaceuticals, Skyhawk Therapeutics, Roche, and the Griffin Foundation.