Selected Topics > Usher Syndrome

Usher Syndrome

Overview

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.

Introductory Resources

Counseling Students Who Have Usher's Syndrome

Source: NETAC

Usher Syndrome

Source: National Institute on Deafness and Other Communication Disorders (NIDCD)

Usher Syndrome in the School Setting

Source: Helen Keller National Center

Usher Syndrome: New Insights Lead to Earlier Treatment

Source: National Institute on Deafness and Other Communication Disorders

What is Usher Syndrome?

Source: Nevada Dual Sensory Impairment Project

Learn More

Children with Usher Syndrome: Learning to Cope through Work with Mentors

Source: Deaf-Blind Perspectives

Deafblind People and Self-Identity

Source: Information Center for Acquired Deafblindness

Driving with Usher Syndrome

Source: Texas School for the Blind and Visually Impaired

Information about Usher Syndrome

Source: Texas School for the Blind and Visually Impaired

National Collaborative Usher Study Newsletter

Source: SENSE

Successful Transition of Students with Usher Syndrome from School to Work or Continuing Education

Source: ICEVI World Conference

Tips for Students with Usher Syndrome

Source: Colorado Services for Children with Combined Vision and Hearing Loss

Understanding Usher Syndrome: Information for School Counselors

Source: New York School for the Deaf

Universality of the Usher Experience

Source: Deaf-Blind Perspectives (page 9)

Usher Family Weekend at Camp Berachah

Source: Deaf-Blind Perspectives

Usher Syndrome Type I

Source: GeneReviews

Usher Syndrome Type II

Source: GeneReviews

Why Won't They Just Tell Him?

Source: Texas School for the Blind and Visually Impaired

Recommended Readings

Other Resources on Usher Syndrome

Video/Audio

MSNBC Today Show: Peter Alexander - My Sister's Story

Rebecca Alexander Interview

Individual or Family Stories

Nordic Project on the Experiences from People with Deafblindness

One Deafblind Woman's Approach to Life

Rapper Sings in Sign

Spotlight on the Deaf-Blind Community: Hands, Heart and Soul

Bibliographies

Usher Syndrome - Educational Implications

Usher Syndrome - General Information

Usher Syndrome - Medical

Usher Syndrome Materials in Spanish

Training Opportunities

Early Usher Syndrome Identification - Webinar and Transcript

Source: National Consortium on Deaf-Blindness

Research

Boys Town National Research Hospital

The Coalition of Usher Syndrome Research

The Foundation Fighting Blindness

Agencies and Organizations

American Association of the Deaf-Blind

Helen Keller National Center

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