LINC

Library & Information Network for the Community

Bibliography on Usher Syndrome

1990-2004

Prepared

January 29, 2004

The purpose of this bibliography is to help consumers and professionals identify books, journal articles, journal titles, articles on the web, and/or web sites, that discuss the subject Usher Syndrome. Not all of the listed materials are owned by LINC, and, not all of the materials have been reviewed by staff. Materials have been included based on publication date and perceived relevancy, and includes those publications from 1990-2004.

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Books

An Open Letter to our Parents: What We Wish You Had Known. (1994). Minneapolis, MN: Usher Family Support.

Carroll, Cathryn; Fischer, Catherine Hoffpauir. (2002). Orchid of the Bayou. Washington DC: Gallaudet University Press.

Enos, JoAnn. (1993). Usher Syndrome and transitions for the future. Brooklyn, NY: Helen Keller National Center - Technical Assistance Center.

Guest, Mary; Singh, Ram. (1991). Parents answer back: parents who have children with Usher syndrome give their views on service requirements from the health, education and social services London : SENSE.

Miner, Ilene; Cioffi, Joe. (1998). Usher Syndrome in the school setting. Sands Point, NY: Helen Keller National Center, Technical Assistence Center.

Poff, Lisa E.; Goehl, Karen S.; Lechner, Linda; Mayfield, Nancy. (2000). Usher Syndrome : identification and understanding. Terre Haute, IN: Indiana Deafblind Service Project, Blumberg Center, Indiana State University.

Stiefel, Dorothy H.; Lewis,Richard A.(1991).The Madness of Usher's: Coping with vision and hearing loss / Usher Syndrome Type II. Corpus Christi, Texas: Business of Living Series.

Usher and You. (ND) London, England: British Deaf Association.

Usher in the family Part 1. (ND). London, England: British Deaf Association.

Usher in the family Part 2. (ND). London, England: British Deaf Association.

Usher Genetics Book. (1995). London, England: British Deaf Association

Usher Syndrome. National Institute on Deafness and Other Communication Disorders (1999). Bethesda, MD: National Institute on Deafness and Other Communication Disorders.

Venet, Rosalind. (1995) Usher syndrome in the deaf community: How did I get usher? London, England: British Deaf Association Sense, National Deaf-Blind and Rubella Association.

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Journal Articles

Guest, Mary. (1998). Getting to work with Usher Syndrome: Talking Sense, 44, (3)14-16.

Loundon, Natalie; Marlin, Sandrine; Busquet, Denise. (2003). Usher Syndrome and Cochlear Implantation. Otology & Neurotology, 24 (2), 216 –222.

Miner, Ilene D. (1997). People with Usher Syndrome, type 2: Issues and adaptations. Journal of Vision Impairment and Blindness, 91 (6), 579-589.

Miner, Ilene D. (1995). Psychosocial implications of Usher Syndrome, Type I, Throughout the life cycle. Journal of Vision Impairment and Blindness, May-June 1995.

Ouyang, XM.; Yam, D; Hejtmancik, JF.; and others. (2004) Mutational spectrum in Usher Syndrome type II. Clinical Genetics, 65 (4), 288-293.

Sandra, L. H. (1997). Different types of Usher Syndrome: Five genes recognized for Usher Type I / Deafblind Inquirer, 2 (1) Winter 6.

Sandra L. H. (1993). How to read an Audiogram. Usher Family Support, 1 (4), 5-8.

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Videos

British Deaf Association. (1995) Oh really ... you have Usher. London, Eingland: BDA & Sense Usher Syndrome in the Deaf Community Project in Partnership.

Indiana Deafblind Service Project Blumberg Center. (1999). Usher Syndrome screening for signs of risk. Indiana State University. Terre Haute, IN: Indiana Deafblind Service Project, Blumberg Center, Indiana State University

Indiana Deafblind Service Project Blumberg Center. (1999). Usher Syndrome understanding the diagnosis. Indiana State University. Terre Haute, IN: Indiana Deafblind Service Project, Blumberg Center, Indiana State University.

Sacks, Oliver W. (1998). The ragin' Cajun. Princeton, N.J.: Films for the Humanities & Sciences.

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Articles on the Web

Guest, Mary. (ND). Usher Syndrome a condition which affects hearing and sight. Retrieved March 16, 2004 from http://www.deafblind.com/usher.html#Usher

The National Institute on Deafness and Other Communication Disorders (2003). Early diagnosis of Usher Syndrome type 1 made possible by new findings: can help Ashkenazi Jewish children who are born Deaf and have progressive loss of sight. Retrieved March 16, 2004 from http://www.nidcd.nih.gov/news/releases/03/04_23_03.asp

National Institutes of Health (1998). Gene identified for a disorder that causes Deafness and Blindness. Retrieved March 16, 2004, from http://www.nidcd.nih.gov/news/releases/98/ushergne.asp

Talking Sense articles (selected) available from

http://www.sense.org.uk/tsarticles/index.cfm

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