ONCE UPON A GENE - EPISODE 064- Seth Rotberg Founder of Our Odyssey and His Mental Health Surrounding a Huntington’s Disease Diagnosis
Our Odyssey is an organization that supports young adults living with rare disease and chronic illness. The founder of Our Odyssey, Seth Rotberg, is passionately driven by his mother's battle with a rare genetic disease called Huntington's Disease (HD). At the age of 20, he also tested positive for the disease. He dedicates his life to helping others on their rare disease journey and chronic illness.
EPISODE HIGHLIGHTS
What is your connection to the rare disease world?
My story started at age 15 when my mom was diagnosed with Huntington's Disease (HD), a rare neurological disease that slowly deteriorates a person's physical and cognitive abilities for which there's no cure. I was fortunate to have a good support system at the time, but no one understood what it meant to be a young adult with a family member impacted by a rare disease. I didn't realize initially that I could also be a carrier of the disease and later found out in college that I was at risk. It impacted me mentally wondering if I had it and I finally got tested so I could plan for my future. I went through genetic testing and tested positive for Huntington's Disease which means I'm not technically diagnosed or currently living with the disease, I'm a gene carrier. Knowing what Huntington's Disease did to my mom, I'm preparing for that happening one day.
How fast did your mom's disease progress and were you at all involved in her daily care?
For years my mom was treated for depression and mood swings, but the other aspects of wobbly movements, poor balance, slurred speech and other cognitive and behavioral effects of the disease. We had a family intervention with my mom and suggested she be checked into a mental health facility. After some testing and further evaluations, it was discovered Huntington's Disease. My dad was her caregiver for 17 years and I helped out, taking on additional responsibility at home. I had to grow up a lot faster than my friends and I went through a lot as a young adult.
When you got your test results back that you were in fact a carrier for Huntington's Disease, what were your next steps?
I thought a lot about what it meant for me and my future and who to tell. I didn't tell my parents for three years because I didn't want my mom to feel guilt when she was already suffering. I was fortunate to have a friend from the HD community with me when I got my results. She was also a young adult who understood and she was there for me. I tried to carry on like the results were not a big deal, but realized over time that it was a part of me and was part of my story.
Did you feel freedom when you shared your test results with friends and family?
Telling people lifted a large amount of weight off my shoulders. I told most people by way of a local newspaper article. What shifted my mindset to tell people was two major life experiences of a good friend passing away unexpectedly in an accident and another friend passing from an ultra rare form of juvenile Huntington's Disease. I realized from this that they lived in the moment and shared their stories and that there was an opportunity to share and help others.
How did you arrive to the point of starting Our Odyssey?
It was because there was an unmet need. I never thought I'd start a nonprofit, but I realized there was a need for young adults living with rare disease. We wanted to help young adults throughout the year, aside from annual events to stay connected and network with others who get it. I was at a rare disease week, talking to young adults about it and there was a lot of interest in putting it together.
What's your most profound accomplishment?
The first is doing a TEDx talk in my hometown, speaking to people afterwards and realizing the power of storytelling and the impact on the community. The other accomplishment was being awarded by the Boston Celtics as the Hero Among Us, which they award at every home game to someone doing work in the community.
LINKS AND RESOURCES MENTIONED
EPISODE 048 - What is Chronically Surviving with Marcelle Longlade
EPISODE 036 - Anna Laurent on Alagille Syndrome and Her Road to Advocacy
TEDx Navigating Genetic Disease Testing: A Personal Story
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