Usher Syndrome Materials in Spanish Bibliography

by DB-LINK on May 1, 2011
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This is a partial list of materials on this topic available from the DB-LINK Catalog Database.  If you have additional questions, please contact us via email:

Updated 5/2011


Communication with Usher People --Palmer, Russ; Lahtinen, Riitta. DEAFBLIND EDUCATION, July-December 1994, pp. 7-9. (1994) This paper is based on the experiences of a couple where one is sighted and hearing and the other has limited sight and hearing due to Usher Syndrome. The authors offer suggestions to others on how to facilitate communication and to ease the stresses of living in such a situation. Available in Spanish.


A Daring Adventure --Cue, Kris. SEE/HEAR, vol.2, #3, Summer 1997, p.6. (1997) The author describes her experience of being diagnosed with Ushers Syndrome as an adult. She describes the development and activities of an Ushers Syndrome Support Group she helped to create in her hometown of Austin, Texas. An editor's note included in the article provides background information about the author and other resources for individuals who are deafblind. Available in Spanish. Available on the web:


Driving with Usher Syndrome: compiled from conversation on the Deaf-Blind List --Moss, Kate. SEE/HEAR, vol. 3, #1, Winter 1998, pp.9-14. (1998) This article contains excerpts of a listserv discussion about getting a driver's license when low vision is a factor. Suggestions to help make the decision are included. The listserv discussion in its entirety is available through the Deaf-Blind List archives. Available in Spanish. Available on the web:


Early Diagnosis of Usher Syndrome --Costa, Maria Luz Perea. INFOSORD, vol.5, #23, October-November 1998. El diagnostico precoz del Sindrome de Usher. (1998) Written in Spanish, this article contains general information on the medical aspects of Usher syndrome. A last point focuses on the "signs of alarm" that can suggest to relatives and professionals the presence of retinitis pigmentosa.


Educational Implications of Usher Syndrome --Costa, Maria Luz Perea. INFOSORD, vol.6, #24, January-February 1999. Implicaciones educativas del Sindrome de Usher. (1999) Spanish, this article contains information about the needs that come into light from the diagnosis of Usher syndrome and how to satisfy them. Information on practical adaptations that make everyday life easier for a person with Usher syndrome is also provided. A list of "contact points" that can help relatives or interested people is included.


Information About Usher Syndrome --Sims, Barbara; Raistrick, Kathryn. SEE/HEAR, vol. 1, no. 2, Spring 1996, pp. 16-20. (1996) This article provides an overview of Usher syndrome, Types I and II, and their respective effects on vision and hearing. The possible impact on education is described, and classroom accommodations in environments, materials, and teaching techniques are suggested. The authors conclude with a discussion of the emotional issues that need to be addressed for both the family and person with Usher syndrome. Available in Spanish.


Motion Pro Usher Syndrome in Venezuela --Neri de Troconis, Maria Luz. 14th DbI World Conference on Deafblindness Conference Proceedings, September 25-30, 2007, Perth, Australia. (2007) This is a two page brief summary of a workshop presentation given at the 14th DbI World Conference on Deaf-Blindness. It describes in 2005 a national movement in Venezuela was undertaken so that Usher syndrome will be known in the world of Special Education and also in the world of medical assistants to increase detection early in life as well as increase quality of life.


Nebraska Usher Syndrome Screening Project --Coonts, Teresa; Giittinger, Sally; Kimberling, Bill; Srb, Steve. Omaha, Nebraska: Nebraska Project for Children and Youth with Deaf-Blindness. (2002) This manual was designed to help school personnel conduct Usher Syndrome screenings. It provides information about Usher Syndrome, screening instructions, screening forms (available in Spanish), and state and national resources. It includes descriptions of Usher Types I, II, and III, causes of Usher syndrome, roles of the screener and interpreter, and information about how to interpret screening results. For copies, contact Teresa Coonts, Project Coordinator, at 402-595-1810 or


An Open Letter to Our Parents: What We Wish You Had Known --Collins, Myra; Delgadillo, David; Frawley, Matt; Kinney, Ginger; Lugo, Joey; Lundgren, Jean; Price, Kathy; Rybarski, Shirley. USHER FAMILY SUPPORT. (September 1, 1994) This letter composed by a group of people with Usher Syndrome who meet weekly at the Helen Keller National Center advise parents to inform their Usher children about their disability, what it is called, that it is genetic, and that it can get progressively worse. The stress and embarrassment produced by symptoms of their condition in the teenage years (night blindness, clumsiness, difficulty in poor lighting) and the insensitivity of teachers unknowledgable about the condition is discussed. None of the contributors received special services before age 17 and they feel that orientation amd mobility training should start earlier with parents' support. They advise parents of deafblind children to learn and use sign language and to insure that their children learn tactual sign, sign tracking techniques, and braille while they are still in school and before they actually need it. They also discuss the emotional ramifications of diagnosis and worsening vision: anger, frustration, and depression, sometimes suicidal, and stress that it is important that parents learn how their children feel and earn their trust by being honest with them about their condition. Available in Spanish.


Research: Looking for Treatments and Cures in Blindness --Moss, Kate. See/Hear, Spring 2006, Vol. 11, #2, 23-27. (2006) There is some fascinating research underway in the area of blindness. The Foundation Fighting Blindness is a major contributor to this effort and has much to share on their website for those who want to keep up with this research. Available in Spanish. Available on the web:


Retinosis Pigmentaria (1) --de Liano, Zato Gomez. PERFILES, Mayo 1994, pp. 46. (1994) Short article in Spanish by an opthamologist describing Retinosis Pigmentaria (RP) and the opthamological exams and treatments used in Spain.


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. The cost is $10.00 including shipping and handling. Call 785-296-2191.


Students with Usher Learn the Ropes --Moss, Kate. SEE/HEAR, vol. 9, #2, Spring 2004, pp. 4-5. (2004) This article describes the experiences that students with Usher syndrome and their families had at a special training held at the Texas School for the Blind and Visually Impaired (TSBVI) from January 22-24, 2004. Students learned about technology, self-advocacy, college and technical training opportunities, and had an introduction to orientation and mobility basics, A favorite activity was the rock climbing gym in addition to exploring the campus, bowling and getting pizza. Available in Spanish. Available on the web:


Usher Syndrome --Sandra L.H. Davenport. Usher Family Support, Spring 1993, pp. 1-4. (1993) Discusses Usher Syndrome, its symptoms, different types of the syndrome, causes and testing for Usher Syndrome.


Usher Syndrome: The Importance of an Early Detection, Educational Implications --Costa, M.L.Perea. Rome, Italy: REVISTA DE LOGOPEDIA, FONIATRIA Y AUDIOLOGIA, vol. XX, #1, pp. 37-43. (2000) This article provides information on Usher Syndrome specifically for people with Usher, their relatives, and for professionals working in the fields of deafness, blindness, or deafblindness. The aim is to get an early detection of the syndrome which minimizes its effects and ensures a greater quality of life. Contents include definition, typology, symptoms of Retinitis Pigmentosa, educational implications and International Contacts. Available only in Spanish.


Usher Teens and Families Come Together --Wiley, David. SEE/HEAR, vol. 5, #3, Summer 2000, pp. 9-10. (2000) This article describes the Usher syndrome family retreat in April 2000 which brought together parents and their children with Usher syndrome. A synopsis of the retreat, and the methods they came up with to stay in touch with one another are described. Available in Spanish. Available on the web:


What is Usher Syndrome? --Nevada Dual Sensory Impairment Project. Reno: Nevada Dual Sensory Impairment Project, University of Nevada. (no date) This Web based document addresses the following: Usher Syndrome definition, who is at risk, available tests, symptoms, eye examination, the importance of early identification, effects of Usher Syndrome on education, and screening. It also includes screening forms and a list of resources. Retrieved August 8, 2004. Available in Spanish. Available on the web: Publisher's web site:

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