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Usher Syndrome: A Personal Story

September 24, 2014

This is the third Blog Post in a series that presents and reviews books in the rare disease and orphan drug space.

The book, “Not Fade Away: A Memoir of Senses Lost and Found”, is just published 2 weeks ago by Gotham Books (Penguin Books). It is the personal journey of the author, Rebecca Alexander, who has the rare genetic disease, Usher syndrome type III.

Usher syndrome is a rare disease that affects hearing and vision and is the leading cause of deaf-blindness in both Europe and the United States. The three types of Usher syndrome all result in progressive vision loss from Retinitis Pigmentosa (RP). Usher syndrome type III results in progressive hearing loss. In the United States, all three types of Usher syndrome affect about 1/23,000 people or approximately 30,000 – 50,000 people. Usher syndrome type III is the rarest, with as few as 100 cases currently identified in the United States and more than 200 in other parts of the world.

Rebecca Alexander as a result of Usher Syndrome has been losing her sight and hearing since childhood. She is told that by age 30 she would be completely blind and deaf. At age 18, Rebecca falls from a window leaving “her athletic body completely shattered.”

This book is the inspirational story of how Rebecca Alexander faces the challenges of her disease and broken body. She goes on to earn two Masters’ Degrees from Columbia University and becomes a psychotherapist. This is her challenge and journey.

Book Cover courtesy of Gotham Books.

Copyright © 2012-2014, Orphan Druganaut Blog. All rights reserved.

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