Seth Rotberg Founder of Our Odyssey and His Mental Health Surrounding a Huntington’s Disease Diagnosis

Once Upon A Gene

English - January 07, 2021 12:00 - 37 minutes - ★★★★★ - 258 ratings
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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?
When you got your test results back that you were in fact a carrier for Huntington's Disease, what were your next steps?
Did you feel freedom when you shared your test results with friends and family?
How did you arrive to the point of starting Our Odyssey?
What's your most profound accomplishment?

LINKS AND RESOURCES MENTIONED
EPISODE 048 - What is Chronically Surviving with Marcelle Longlade
https://effieparks.com/podcast/episode-48-chronically-surviving
EPISODE 036 - Anna Laurent on Alagille Syndrome and Her Road to Advocacy
https://effieparks.com/podcast/episode-36-anna-laurent-alagille-syndrome
Our Odyssey
https://ourodyssey.org/
TEDx Navigating Genetic Disease Testing: A Personal Story
https://www.ted.com/talks/seth_rotberg_navigating_genetic_disease_testing_a_personal_story

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CONNECT WITH EFFIE PARKS
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https://effieparks.com/
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https://twitter.com/OnceUponAGene
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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?

When you got your test results back that you were in fact a carrier for Huntington's Disease, what were your next steps?

Did you feel freedom when you shared your test results with friends and family?

How did you arrive to the point of starting Our Odyssey?

What's your most profound accomplishment?

LINKS AND RESOURCES MENTIONED

EPISODE 048 - What is Chronically Surviving with Marcelle Longlade

https://effieparks.com/podcast/episode-48-chronically-surviving

EPISODE 036 - Anna Laurent on Alagille Syndrome and Her Road to Advocacy

https://effieparks.com/podcast/episode-36-anna-laurent-alagille-syndrome

Our Odyssey

https://ourodyssey.org/