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Usher Syndrome

Usher syndrome is a common cause of deaf-blindness. It includes a group of genetic conditions involving both hearing loss and retinitis pigmentosa, a progressive, degenerative eye disease. The most common type is Type I which consists of profound congenital deafness with retinitis pigmentosa and severe balance problems. Type II consists of a moderate-severe hearing loss, no balance problems and retinitis pigmentosa. Type III consists of normal hearing at birth with progressive loss in childhood or early teens and night vision problems (retinitis pigmentosa) often begins in the teen years. Some children with Type III develop balance problems as they grow older. Hearing and sight decrease over time, but the rate at which they decline varies among individuals.

Harmonin Study Adds New Piece to Usher Syndrome Puzzle

Life and Change with Usher: The Experiences of Diagnosis for People with Usher Syndrome (Full Report)

Summary of Life and Change with Usher: The Experiences of Diagnosis for People with Usher Syndrome

Usher Syndrome Coalition

Usher Syndrome in the School Setting

What is Usher Syndrome?

2017 National Webinar: Starting a National Dialogue on Finding Children with Usher Syndrome

Communication in DeafBlind Adults with Usher Syndrome: Retrospective Observational Study

My Apple Watch After 5 Days

One Deafblind Woman's Approach to Life

Other Resources on Usher Syndrome

Psychosocial Impact of Usher Syndrome Presentation

The experiences of diagnosis for people with Usher syndrome

Usher Syndrome

Usher Syndrome - Educational Implications Bibliography

Usher Syndrome - General Information Biblliography

Usher Syndrome - Medical Bibliography

Usher Syndrome Materials in Spanish Bibliography

Videos about Usher Syndrome Presented in ASL (Usher Syndrome Coalition)

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