Between Worlds: Usher syndrome type III

Patient Stories with Grey Genetics

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!

Have thoughts or a related story you’d like to share? Leave us a short voice message here! We may use your message on a future show.

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.

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. All genetic counseling appointments take place over secure, HIPAA-compliant video-conferencing or by phone.

--- Send in a voice message: https://podcasters.spotify.com/pod/show/patient-stories-with-grey-genetics/message