Books by Authors with Usher Syndrome

These books are written by authors with Usher syndrome. 

  • “You are extraordinary!” Jordyn’s father says.
    Extraordinary Jordyn and her Bionic Ears is an encouraging children’s story about a young girl passionate about space and self-advocacy. Join Jordyn as she overcomes judgment for her cochlear implant and hearing aid, uplifting children embracing their extraordinary differences. This book is great for ages 3-8 years old.
    Written by Jasmine Simmons, Au.D., CCC-A, Clinical Audiologist.

  • Author Tiffany Kohnen covers 15 different topics and strategies meant to teach you about hearing loss.

  • Author Tiffany Kohnen tackles 14 different topics and offers strategies meant to teach you about vision loss.

  • This book, with text on the left and drawings on the right, clearly and more thoroughly explains the life of a person with USHER, from childhood to adulthood: the importance of putting words to your difficulties as soon as possible; adaptations at each age; different means of communication and; international testimonials from individuals who are DeafBlind and have USHER on their experience and the adaptations they have made with the help of their relatives or professionals.

  • A front-row seat into how Kevin Frost's life changed when he heard his diagnosis and what he did to get through the depression that engulfed him to become an accomplished sportsman, a dad, a life partner, son, brother, teammate, and activist.

  • Mani Iyer is an author with Usher syndrome. This book is a compilation of his poetry.

  • My Maggie is a rare and real love story. Rich and Maggie King were two people who never gave up on each other a testament to a love few have the will to attain. She was his childhood sweetheart and wife of thirty-two years. Diagnosed with hearing loss at the age of four, she wore cumbersome hearing aids and felt the humiliation of being different. Slowly, an insidious disease (Usher syndrome) robbed her of vision. She fought three different cancers, changed careers in the middle of her life, and fought to realize her dreams. Yet, underneath these great challenges, two people shared an incredible love. It was cemented by adversity and reached a near-perfect spiritual connection.

  • Author Rebecca Alexander tells her extraordinary story, by turns harrowing, funny, and inspiring. She meditates on what she’s lost—from the sound of a whisper to seeing a sky full of stars, and what she’s found in return—an exquisite sense of intimacy with those she is closest to, a love of silence, a profound gratitude for everything she still has, and a joy in simple pleasures that most of us forget to notice.

  • The Kitty Fischer story, written by Cathryn Carroll and Catherine "Kitty" Hoffpauir Fischer.
    The author describes her life and her cultural odyssey as a Cajun woman from Louisiana with Usher syndrome. Fischer is a former librarian at the Model Secondary School for the Deaf.

  • "I was born deaf with Type 1 Usher Syndrome, but I didn't know it. This is how I gradually discovered that I did not see like everyone else, but without knowing that my eyes had a problem. I have always liked to travel. This book is an account of my travels; I tell you all the little tips you need to use to cope with your disability, with the help of others as well."
    Published in 2020

  • Walk in My Shoes: An Anthology on Usher Syndrome is the first and only published book written by 28 writers who are touched by Usher syndrome. It is a web of biographies spun into a beautifully crafted book of hope.