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Between Worlds: Usher syndrome type III

Between Worlds: Usher syndrome type III

FromPatient Stories with Grey Genetics


Between Worlds: Usher syndrome type III

FromPatient Stories with Grey Genetics

ratings:
Length:
54 minutes
Released:
Mar 31, 2020
Format:
Podcast episode

Description

When Rebecca Alexander was 12 years old, she had trouble seeing the blackboard. She made her way from an optometrist to an ophthalmologist and was eventually diagnosed with Retinitis Pigmentosa (RP). Her parents were told that she would be blind by the time she was an adult. Rebecca also had a cookie bite of hearing loss. Through high school, she wore her hearing aids as little and as discreetly as possible. It wasn’t until Rebecca was in college that she experienced extreme tinnitus and saw an otolaryngologist that the diagnosis of Usher syndrome became real.
Today, Rebecca Alexander is an award-winning author, psychotherapist, keynote speaker, group fitness instructor, disability advocate, and extreme athlete. She also has Usher syndrome type III, and is almost completely blind and deaf. Her book, Not Fade Away: A Memoir of Senses Lost and Found is being made into a major motion picture. GAP licensed a mantra from her memoir, “Breathe in Peace, Breathe out Fear,” and launched a campaign on International Women’s Day in March 2020, featuring Rebecca as well as another woman with Usher syndrome. The two t-shirts that GAP created have already sold out, but you can see the campaign video here!

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Rebecca Alexander’s website
Buy Rebecca's book: Not Fade Away: A Memoir of Senses Lost and Found
Connect with Rebecca on Social Media:
Rebecca on Twitter: @Reb_Alexander
Rebecca on Instagram: @reb_alexander
Rebecca on Facebook

Resources related to Usher syndrome
Usher Syndrome Coalition 
Usher Syndrome Society
Ava’s voice (in NJ)
The Foundation Fighting Blindness
The Hellen Keller National Center

Check out other Patient Stories podcast episodes.

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Released:
Mar 31, 2020
Format:
Podcast episode

Titles in the series (92)

Genetics isn’t always black and white. And the emotions and decisions surrounding genetic testing can be even more complex. Hosted by genetic counselor Eleanor Griffith, the show brings you the personal experiences of patients and genetic counselors.