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Other Resources on Usher Syndrome

by DB-LINK on May 1, 2011
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A number of excellent resources on Usher syndrome are not available online. The following is a list of some key resources. If you would like help locating items on the list or getting additional information, contact us via email at info@nationaldb.org

Official Patient's Sourcebook on Usher Syndrome --Parker, James N., M.D. (Ed.); Parker, Philip M., Ph.D. (Ed.) San Diego: ICON Health. (2004) Organized into three parts. Part I explores basic techniques to researching Usher Syndrome, followed by a number of topics, including information on how to get in touch with organizations, associations, or other patient networks dedicated to Usher Syndrome. It also includes sources of information that can help find a doctor in your local area specializing in treating Usher Syndrome. Part II moves on to advanced research dedicated to Usher Syndrome. It provides direction to the latest scientific and applied research and when possible, contact names, links via the Internet, and includes summaries. Part III provides appendices of background reading for all patients with Usher Syndrome or related disorders. It focuses on advice that goes beyond the biological and scientific issues facing patients with Usher Syndrome.

Understanding Usher Syndrome: An Introduction for School Counselors --DiPietro, Lorraine J. (Ed.) Sands Point, NY: Helen Keller National Center. (2002)This book provides information and resources about Usher Syndrome for counselors and educators who serve school-age students. It introduces the reader to basic information about the syndrome, stressing developmental and emotional issues that commonly arise for students and parents, to help them integrate this diagnosis into their lives. It also includes sections about the concomitant hearing loss and vision loss in Usher Syndrome and its effect on communication, career planning, and educational programming. Personal accounts by adults with Usher Syndrome and parents of children with Usher Syndrome provide first hand experiences. Significant program resources and recommended readings are included for future reference. To order call 516-944-8900, ext. 325 or email hkncinfo@hknc.org. Cost: $15 which including shipping and handling. Supplies are limited. Orders will be filled on a first come/first prepaid served basis.

Screening for Usher Syndrome : A hands-on guide for school nurses --Houghton, Joan, MS Ed; Coonts, Teresa, MS Ed; Jordan, Beth, M Ed. Topeka, KS: Kansas Services for Children and Youth with Dual Sensory Impairments, Kansas State Department of Education. (1998)

This manual was written specifically to help school nurses conduct screenings for Usher syndrome. It provides the step-by-step process of how to conduct a screening, the forms needed for a screening, and resources for referring students for further evaluations and counseling. Screening is divided into two parts: paper screening identifies family history and behavior characteristics, and station screening, which tests visual field, cone adaptation, and balance. Supplemental materials include one-page overviews of retinitis pigmentosa, characteristics of Usher syndrome and sensorineural hearing loss, electroretinogram evaluation, and how to explain Usher syndrome to kids. Family, student, and behavior questionnaires are available in Spanish.

Silence with a Touch : Living with Usher Syndrome Rochester, NY: National Technical Institute for the Deaf. (2006)

This DVD introduces several individuals, from early adolescence to adulthood, who are living with Usher Syndrome, a genetic condition that causes both hearing loss and progressive vision loss. The individuals profiled are shown in a variety of settings including at school, at home, and in places of employment. All speak about how Usher Syndrome has changed their lives and about the adjustments and challenges they face. It was produced by the National Technical Institute for the Deaf in cooperation with the New York State Technical Assistance Project Serving Children and Youth Who Are Deafblind.


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