My Huntington’s Disease Story

 Seth Rotberg

For years, Seth has made a huge impact on the lives of young people who are affected by Huntington’s Disease. It all began during his sophomore year of college when only he started a 3-on-3 basketball charity event that brought in $10 thousand for HD in a matter of three years, all while he was still in college. From there, Seth’s charitable contributions and advocacy for HD only began to increase. In a matter of five short years, Seth has been the president of the Huntington’s Disease Society of America’s (HDSA) National Youth Alliance (NYA), a board member of his HDSA chapter affiliate, and the coordinator for his yearly Hoop-A-Thon fundraiser. Now, he still remains an active member of the NYA and the HDSA, and volunteers for the Huntington’s Disease Youth Organization (HDYO). His current charitable venture consists of training for the annual 26-mile TCS marathon in NYC for team HDSA. On top of marathons Seth has run in the past, his future competition in NYC has already raised over $5 thousand for various HD organizations.

On a more personal level, I have been able to witness time and time again how Seth has changed the lives of youth affected by HD. He speaks openly and honestly about his struggles and the how they have helped him grow, and he freely shares stories on his testing experience, losing his mother to HD, and dealing with the disease himself. Soon after I tested positive, one of my friends in the HD community told Seth about me, and without hesitation, he had me on the phone, providing comfort and advice to a total stranger. I’ve watched him openly offer the same kind of love to our youth with consistency and commitment. He is able to read them like an open book, providing a shoulder to cry on when it’s called for or making a whole room laugh when they need a break from heavy talks. Seth is a role model, a hard worker, an inspiration-and I am proud to call him my friend.


By Seth Rotberg

As a young person, Huntington’s Disease (HD) was never easy for me to deal with. The first time I learned about the disease, I was about 15/16 years old, and my parents sat me down at the dinner table to reveal that my mom had HD. Before I go into how I grew up in an HD family, let me rewind a bit to give you some more history about my family.

Our family never had any knowledge of HD until my mom became diagnosed with it.

When I was in middle school, we started noticing that she was feeling depressed, having mood swings, and growing clumsy. Don’t get me wrong, we can all be clumsy at times, but when she saw a doctor about the other two issues, he simply said that she had major depression and bipolar disorder. However, things kept getting worse at home.

There were nights that I would stay at my friend’s house because I needed a break from my family life. At one point, my dad even thought about leaving my mom, but right before he reached his final breaking point, our whole family (plus my mom’s brother and sister) decided to schedule an intervention.

We sat my mom down and let her know that she needed help. With a firm tone, we told her that we were checking her into a mental facility to be examined, and that she would not get to have a say in our decision.

It was difficult for me to imagine myself in her shoes: Having the ones you loved and trusted more than anything in the world demand that you be submitted into a mental facility against your own will. Needless to say, my mom was not happy at all. In fact, she was furious. But we were running out of options and precious time, so we forced ourselves to surrender to our “last resort” in hopes of discovering some answers. She was becoming a different person more and more everyday.

None of this had been easy for me or my mom, and I was fully aware of the role I played in her predicament. I knew that our decision had been for the best, but my body couldn’t fight the sinking feeling of guilt that bubbled in my stomach every time I went for a visit. In the back of my mind, I couldn’t help feeling that she shouldn’t have been in there.

After a few days, or maybe even a week, the doctor brought my mom and dad into his office, asking if there had been a history of Huntington’s Disease in our family. Of course that said no, but after doing some blood work , they officially diagnosed my mom with HD.

That night at the dinner table when my parents broke the news to me, I sort of shrugged it off like it wasn’t a big deal. I didn’t really understand the severity of the disease, and in the natural sense of denial that fear brings, I convinced myself I didn’t really care too much, either. I remained in denial for the remainder of my high school years, burying myself beneath academics and my social life rather than focusing on HD.

Once I got to college, however, things began to change. I decided to look more into HD, so I conducted some research on what it entailed, the symptoms it brought, and the science behind its genetic make-up. To my horror, I discovered that it was a hereditary disease, and that each child of a parent with HD had a 50-50 chance of inheriting it.

I became paranoid. I convinced myself that every bought of clumsiness-every stumble, every stutter, every spill- might be Huntington’s Disease beginning its reign over my body. Thoughts of getting tested for HD really consumed me during my freshman year of college. One day, I decided to call up my sister and aunt to discuss my thoughts on the process. After careful deliberation, I concluded that I wasn’t ready to know. Perhaps I had even been over thinking things.

Or had my worries been rational?

Sophomore year, the idea of testing came back with a vengeance, except this time, I didn’t turn to my family for advice. I took a deep breath, disclosed my secret to a few, close friends, and went to get tested.

I didn’t go through the standard testing procedure that most people take. I did everything the wrong way: I went through a neurologist instead of someone who specialized in HD, and I didn’t see a genetic counselor before receiving my results. I did, however, test anonymously, and though, in the end, I felt very prepared with a good support system behind me, I believe that without genetic counseling, my case was very rare.

To make a long story short, I took this testing route because I didn’t want my sister, my dad, or anyone else in my family to know I was testing. My dad was the caregiver for my mom at the time and didn’t need to carry any more worry or stress, and I didn’t want to put pressure on my sister to go get tested. I also didn’t want my family to know in case they accidentally told my mom. The last thing I wanted was for her to feel guilty if she had passed this fatal disease down to me.

The day finally came for me to receive my results. I brought one of my closest friends with me.

Positive. 

I had already managed to convince myself that I was going to test positive, but hearing the words come out of the neurologist’s mouth just made it so…official. It’s definitely not an easy thing to wrap your mind around.

I only told a few friends about my results. It was difficult at first, but days, weeks, months, and a year passed as I began to feel more comfortable with HD. It was always going to be a part of who I am. After a while, I slowly began to tell more of my friends, and after an even longer while, I mustered up the courage to tell my family.

It took me two years to tell them, to be exact. People often ask me, “How did you keep it from them for two years?” To be honest, I don’t know, but if I could go back in time, I would tell them everything from the beginning. It is so important to have the support of your family when going through a big decision like this. After I told them, (which was one of the hardest things I have ever had to do) I told even more family members, and then I decided to write a public article on my experience, exposing my secret to the world. You can read my article here.

I tell you my story because growing up with the disease is not easy, and it is important to have a good support system when facing this awful sickness. Don’t feel like you have to go through this alone. Not only do I have my friends and family, but I have the WHOLE HD COMMUNITY! It’s great to have access that allows me to talk with other young people going through the same thing because they tend to understand HD better than anyone else.

I will continue to support young people impacted by HD because it is important for them to have the proper resources and educational materials they need in order to deal with the daily struggles it brings. If anyone is interested in learning more about my story or have any questions, feel free to email me at this address.

One last piece of advice: Take things in life one day at a time, and remember that we are all in this together until the end!

Leave a Reply