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Living and Learning with Huntington’s

After years of misdiagnoses, Seth Rotberg’s mother was finally diagnosed with Huntington’s Disease (HD) when he was 15 years old. At the age of 20, Seth had genetic testing and also tested positive for HD. Initially, Seth stayed in the “genetic disease closet,” telling only close friends about his positive test results and waiting 3 years to tell his father and sister. The loss of two close friends at a young age shifted Seth’s perspective, inspiring him to open up about his positive genetic testing results, to strive to live fully in the present while hoping and working toward a brighter future and a cure for HD. 

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Story Reference Points

What is Huntington’s Disease (HD)? @ 1:45
Seth’s mother is diagnosed with Huntington’s Disease @ 4:07
Seth has genetic testing done for HD at age 20 @ 14:22
Why Seth wishes he’d had genetic counseling before HD testing @ 18:44 
Seth seeks out genetic counseling 6 years after testing @ 23:25
Seth becomes involved with HD support organizations @ 25:04
Seth loses a close friend in an accident @ 27:25
HD and research @ 31:52 
The genetic disease closet @ 35:00
HDYO, HDSA, and HD Buzz as resources @ 36:55 
Misconceptions surrounding HD @ 39:49

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