Living and Learning with Huntington's

An episode of the Patient Stories with Grey Genetics podcast, hosted by Grey Genetics, titled "Living and Learning with Huntington's" was published on April 30, 2019 and runs 44 minutes.

April 30, 2019 ·44m · Patient Stories with Grey Genetics

Summary

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. 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 Links and Resources Seth’s website Seth’s TEDx talk HD Resources: Huntington’s Disease Youth Organization Huntington’s Disease Society of America HD Buzz Connect with Seth on Social Media: Seth on Twitter: @Srotberg15 Seth on Instagram: @Rotberg15 Watch for Seth’s upcoming interview on the DNA Today Podcast Check out other Patient Stories podcast episodes. Read other Patient Stories on the Grey Genetics Patient Stories Page Do you want to support Patient Stories? You can now make a donation online! Want to support Patient Stories in a non-monetary way? Leave us a review on iTunes, or share your favorite episodes on Social Media. Patient Stories on Twitter: @GreyGeneticsPod Patient Stories on Instagram: @patientstoriespodcast Are you looking for genetic counseling? Patient Stories is sponsored by Grey Genetics, an independent telehealth genetic counseling and consulting company. Book an appointment with a genetic counselor specialized in your area of concern. Choose from our growing Network of Genetic Counselors. All genetic counseling appointments take place over secure, HIPAA-compliant video-conferencing or by phone. Check out our new family history review services here

Episode Description