21. National Center For The Study And Treatment Of Usher Syndrome usher syndrome is a devastating genetic disorder that first robs its victimsof their hearing, and then slowly takes away their vision as they approach http://www.boystownhospital.org/UsherSyndrome/index.asp

View David's Story dial-up broadband Read David's Story Receive David's Story Usher syndrome is a devastating genetic disorder that first robs its victims of their hearing, and then slowly takes away their vision as they approach adulthood. The leading cause of combined deafness and blindness in the United States, Usher syndrome affects an estimated 30,000 to 40,000 Americans with as many as 30 million people who may be carriers of Usher genes. Insights from our Research Leaders Patient Profiles Make a Donation Opening the World to Children With Usher Syndrome Children with Usher syndrome are born with varying degrees of hearing loss. Vision loss due to retinitis pigmentosa (RP), an eye disorder that results in gradual loss of vision, commonly is not identified until a child reaches adolescence. Loss of these two vital senses shuts these individuals out of the world around them and prevents them from experiencing many of life's pleasures and opportunities.

22. Usher Syndrome Home Deafblindness . usher syndrome. What is usher syndrome? People who have UsherSyndrome in a learning situation; Guidelines for Designing Clear Text. Cause. http://www.deafblindscotland.org.uk/text/db/tindexus.htm

with graphics Home Deafblindness Usher Syndrome What is Usher Syndrome? Genetics in Usher Syndrome Interpreting for people with Usher Syndrome How to make best use of residual sight and hearing ... Communication Section of website Home About us What's new Support Us ... Deafblind alphabet Deafblind Scotland, 21 Alexandra Ave, Lenzie, Glasgow, G66 5BG, Scotland Tel/Text: 0141 777 6111 Fax: 0141 775 3311 Email: info@deafblindscotland.org.uk Website: http://www.deafblindscotland.org.uk

23. Deafblindness - Usher Syndrome Text version. Contact Us. Cause. usher syndrome. Communication. Training opportunities.Home Deafblindness . usher syndrome. What is usher syndrome? http://www.deafblindscotland.org.uk/db/indexus.htm

Deafblindness Home About us What's new Support Us ... Deafblindness Usher Syndrome What is Usher Syndrome? Genetics in Usher Syndrome Interpreting for people with Usher Syndrome How to make best use of residual sight and hearing ... Guidelines for Designing Clear Text Did you know ...? Deafblind Scotland arranges an Usher Syndrome support group meeting twice a year. The association of deafblind and dual sensory impaired people

24. Usher Syndrome In The School Setting usher syndrome in the School Setting. Ilene Miner, CSW Joe Cioffi, M.Ed. Published by Helen Keller National Center Technical Assistance http://www.tr.wou.edu/dblink/usher-index.htm

Text only please DB-LINK Home Selected Topics Introduction ... Resources Usher Syndrome in the School Setting Ilene Miner, CSW Published by Helen Keller National Center Technical Assistance Center Sands Point, NY 11050 The development and dissemination of this monograph was supported by cooperative agreement #H025E50001 from the U.S. Department of Education . The opinions expressed in this monograph are solely those of the authors. No official endorsement by the U.S. Department of Education is intended or should be inferred. About the Authors Ilene Miner, CSW, ACSW, is a certified social worker who has worked with deaf and deaf-blind youth for 20 years. She is fluent in American Sign Language. She is currently Director of Mental Health Services at The League for the Hard of Hearing in New York City. For five years she was consulting clinical social worker at Helen Keller National Center in Sands Point, New York where she provided individual counseling, psychosocial assessments, and co-facilitated the Usher Support Group. She has published several articles on the psycho-social aspects of Usher syndrome, has just completed a book chapter on psychotherapy with deaf-blind people, and presents at workshops related to Usher syndrome around the country and abroad. Joe Cioffi M.Ed. is a deaf-blind education specialist and a certified Orientation and Mobility specialist. He is fluent in ASL and has worked with deaf-blind adults and children for 20 years. Currently, he is working as a free-lance consultant for a variety of schools and state agencies which provide services to deaf-blind adults and children. He has published articles previously on the subject of Orientation and Mobility and deaf-blindness, and has traveled extensively in the USA and abroad providing training to professionals in Usher syndrome and Orientation and Mobility.

25. Usher Syndrome And The Student IV. usher syndrome and the Student. What happens to students with Ushersyndrome in school and community activities? Group activities http://www.tr.wou.edu/dblink/usher-iv.htm

DB-LINK Home Selected Topics Introduction Defining Usher ... Resources IV. Usher Syndrome and the Student What happens to students with Usher syndrome in school and community activities? Group activities are often avoided because of decreasing ability to handle group communication and increasing inability to move around safely. It is critical that students with Usher syndrome be offered training in skills to help them maintain their independence. When this does not occur, students often start to isolate themselves and to avoid going out. They tend to become dependent on others to take care of all their community needs. Students who know about their Usher syndrome may be fearful of telling friends because they fear rejection. In schools, teens have reported that there is really no one to talk to, that people tend to avoid addressing the issue. Some students, especially those with Usher syndrome, Type 1, learn quite young that the members of the Deaf community are not always comfortable and sensitive to a student with a vision loss. In addition, their academic performance often declines because of their inability to see everything that takes place in the classroom. When students avoid group activities, experience stress in the classroom, and are unable to talk about their feelings, the result can be depression.

26. Usher Syndrome Information Kit usher syndrome Information Kit. An informative usher syndrome informationkit is currently available from The Deafblind Association. http://www.dba.asn.au/usherkit.htm

Usher Syndrome Information Kit An informative Usher syndrome information kit is currently available from The Deafblind Association. In large print format, the kit deals with a number of informative topics including explanations of the different types and effects, reactions to diagnoses, a guide for parents, the facts about retinitis pigmentosa, the state of research, cataracts, interpreting, hints for classroom teachers and stories about people with Usher. The kits are available to people living in Australia for $8 (individuals) or $13 (organisations) inclusive of postage. NOTE: These are Australian prices. Overseas airmail per-copy cost for individuals is $US15.00. You may order the information kit in a number of ways Contact The Deafblind Association, PO Box 1213, Camberwell Vic. 3124 for an order form. Print out this page and send the form below to the Association by mail or fax with your credit card details. Print out this page and mail the form below to the Association with your cheque or postal order. If ordering from overseas, please pay by banker's draft.

27. Usher Information Information for parents on usher syndrome and services available inVictoria, Australia. Brief An example is usher syndrome. Usher http://www.dba.asn.au/usherinf.htm

Brief information for parents on vision and hearing impairment and Usher Syndrome Victorian-based services. DOES YOUR CHILD HAVE? This information is designed to alert parents to changes in their children's hearing and vision. It provides details on the relevant organisations to contact for further information. This information has been developed by the Victorian Usher Syndrome Project Committee (1998) VISION IMPAIRMENT Poor vision is not always apparent with children. Children themselves are not always aware that they see worse than other people - the child believes that everyone sees the way he/she does. Children may suffer from one of the frequent vision impairments such as short-sightedness, cross-eye astigmatism, etc. In most cases, these vision impairments can be easily corrected. Symptoms in children alerting you to vision impairment include: * Writing above or below lines * Often blinking or rubbing eyes * Wrinkling or squinting eyes to look at something closely * Hold small objects close to examine them * Sitting close to TV * Difficulty estimating distances * Fear of stumbling * Avoiding games which require quick visual reaction (e.g. skipping, ball games)

28. Ushernet.org - Usher Study By Mary Guest - Usher-Syndrome What is it? usher syndrome is an inherited condition which results in hearingloss and a progressive loss of vision from Retinitis pigmentosa (RP). http://www.ushernet.org/en/ushersyndrome/study/

Forschung Contra Blindheit - Initiative Usher-Syndrom e.V. Deutsch Content Donate Money Get Free Infos ... Summary Usher Study by Mary Guest A Condition which affects Hearing and Sight. by Mary Guest, Head of Usher Services at Sense. What is it? Usher syndrome is an inherited condition which results in hearing loss and a progressive loss of vision from Retinitis pigmentosa (RP). The hearing loss is thought to be congenital, and ranges from moderate to profound. RP can occur without hearing loss. The condition is named after a British ophthalmologist, C.H. Usher, who in a paper in 1914 described several cases in which the link between congenital deafness and RP was stressed. However, as far back as 1860 workers such as von Graef and Liebreich in Berlin were aware of the link between congenital deafness and RP, especially in consanguinous marriages. This webpage is designed for disabled people and based on the guidelines of the Web Accessibility Initivative A charity registered in Germany, Magistrate Court, Hamburg, Germany, Reg. No. VR 14423

29. Nevada Dual Sensory Impairment Project--What Is Usher Syndrome? What is usher syndrome? What is usher syndrome? Who is at Risk? What are SomeSymptoms of usher syndrome? What are Symptoms the Individual May Notice? http://www.unr.edu/educ/ndsip/usher.html

Project News Does this Child See/Hear? Referral Form Parent Bulletin Board ... Site Map What is Usher Syndrome? What is Usher Syndrome? Who is at Risk? What Tests are Available? What are Some Symptoms of Usher Syndrome? ... Contact Us Back to the College of Education Back to the University of Nevada, Reno Please direct questions to: marty@unr.nevada.edu URL of this document: http://www.unr.edu/educ/ndsip/ Contact Us Back to College of Education Back to the University of Nevada, Reno

30. Nevada Dual Sensory Impairment Project--Symptoms Of Usher Syndrome What are Some Symptoms of usher syndrome? Constantly appears to bevisually scanning a group. Return to usher syndrome Main Menu. http://www.unr.edu/educ/ndsip/ushsymptoms.html

Project News Does this Child See/Hear? Referral Form Parent Bulletin Board ... Site Map What are Some Symptoms of Usher Syndrome? The following are some behavioral symptoms that may indicate Usher syndrome and can be used for initial screening purposes. Use the Behavioral Observations form along with this section. Hearing Loss Born with profound sensorineural hearing loss for Type I Usher. Have a moderate to severe, sloping sensorineural hearing loss for Type II Usher. Has progressive hearing loss for Type III Usher. Night Blindness Has difficulty seeing when coming in from bright sunlight. Trips over things when light changes or when light is dim. Stays near light in a dark room or at night. Positions self so light falls on the face of a speaker. Has difficulty seeing seats of people in a darkened room (e.g., movie theater). Glare Sensitivity Squints and shades eyes in bright lights or fluorescent lighting. Likes to wear sunglasses even in a building, but especially in bright light. May appear awkward when exiting from a building (when faced with bright lights). Needs Contrast Has difficulty reading light copies or ditto copies.

31. Usher-list: The Usher Syndrome Mailing List usherlist The usher syndrome Mailing List. The usher-list is a milinglist for people with usher syndrome, their families, friends http://www.deafblind.co.uk/usher-list.html

usher-list: The Usher Syndrome Mailing List The usher-list is a miling list for people with Usher Syndrome, their families, friends and for professionals who work with them. It does not replace the DEAFBLND mailing list or the RPLIST. To subscribe to the usher-list send an e-mail message to majordomo@farside.cc.misu.nodak.edu with a blank subject line. If you have to provide a subject line just put subscribe In the message body put subscribe usher-list If you have any problems with the list please contact Back to the main deafblindness Page Last Modified on 24-AUG-1997 by

32. Exceptional Children Division - Usher Syndrome Screening usher syndrome Screening. What is usher syndrome? usher syndrome is a verydifficult disease to describe because each case is so different. http://www.dpi.state.nc.us/ec/usher.htm

Curriculum Publication Sales Education Initiatives Agency Web Sites ... NC Schools Listing Usher Syndrome Screening What is Usher Syndrome? Usher Syndrome is a genetic disorder characterized by serious hearing impairment, present at birth or shortly thereafter, and progressive vision loss due to Retinitis Pigmentosa (RP). Researchers believe that the loss of hearing is sensorineural deafness and is due to a problem with the sensory (nerve) cells in the cochlea of the inner ear. The vision loss begins later in life, but usually before adolescence. There is no way of knowing the time of onset or the rapidity of the vision loss. Usher Syndrome is a very difficult disease to describe because each case is so different. The changes in hearing and vision are not the same for all people who have Usher Syndrome. Three major types of Usher Syndrome Why is early detection important? What are behavioral symptoms that may suggest Usher Syndrome? Screening requirements in North Carolina Public Schools ... Mike Ward , State Superintendent NCDPI Phil Kirk,

33. Driving With Usher Syndrome Driving with usher syndrome. compiled answer. For parents of childrenwith usher syndrome confronting this issue, I encourage you to http://www.tsbvi.edu/Outreach/seehear/winter98/driving.htm

Home Site TOC Site Search Outreach ... Go to See/Hear Archive from the Winter 98 issue Driving with Usher Syndrome compiled from conversation on the Deaf-Blind List by Kate Moss , TSBVI Deafblind Outreach For many parents of children with low vision, deciding whether or not to let their son or daughter get a driver's license or attempt to drive is a difficult decision. Even though some individuals may have substantial visual field impairments at an early age, they may still be able to pass the Department of Motor Vehicle's (DMV) eye exam since a visual field test which checks peripheral vision is not a part of that exam. Additionally, the driving portion of the test may not take place during the evening hours, so night blindness may also go undetected by the examiners. Students who go through driver education generally do have to undergo part of their driving during twilight conditions, which can create problems for the student with Usher's and some other eye conditions. As you will learn from this discussion, there does not seem to be a "right" answer. For parents of children with Usher Syndrome confronting this issue, I encourage you to: Discuss your child's visual functioning and prognosis with your ophthalmologist or low vision specialist especially as it relates to driving;

34. Usher Syndrome: Families Come Together For Support usher syndrome Families Come Together for Support. Many had never metanother family who was dealing with the issues of usher syndrome. http://www.tsbvi.edu/Outreach/seehear/spring98/usher.html

Go to Archive Table of Contents. Usher Syndrome: Families Come Together for Support by Connie Miles, Educational Specialist and Kate Moss , Family Training Coordinator, TSBVI Deafblind Outreach Parents of children with Usher Syndrome had an opportunity to meet with each other during this year's Symposium on Deafblindness in Austin, TX. The parents came from urban and rural areas of Texas. Some of these parents had just recently learned of their child's condition, while others had known about it for years. Many had never met another family who was dealing with the issues of Usher Syndrome. All these families welcomed the opportunity to share information, questions, concerns, and resources with each other. All arrived accompanied by dreams and photos of their children. Each family went away with hopes to come together again. sheditor@tsbvi.edu Go to Top of Page Send EMail to SEE / HEAR ... Go to Archive Table of Contents.

35. Usher Syndrome usher syndrome is a genetic disorder characterised by the loss of both hearing andvision. Some people also experience problems with balance. usher syndrome. http://www.disability.vic.gov.au/dsonline/dsarticles.nsf/pages/Usher_syndrome?Op

36. Hearind Disorders - Usher Syndrome - Methodist Health Care System, Houston, Texa usher syndrome What is usher syndrome? usher syndrome is passed from parents to theirchild(ren) genetically. What are the different types of usher syndrome? http://www.methodisthealth.com/otolaryn/usher.htm

Hearing Disorders Home Clinical Services The Methodist Hospital Otolaryngology Service The Methodist Hospital Audiology Service ... Methodist Health Center- Sugar Land Hearing Disorders Audiology Hearing Loss Presbycusis Tinnitus ... Home Usher Syndrome What is Usher syndrome? Usher syndrome is an inherited disorder that involves both a hearing impairment and a vision impairment called retinitis pigmentosa. Some people also have varying problems with balance. Usher syndrome is passed from parents to their child(ren) genetically. What are the different types of Usher syndrome? There are three types of Usher syndrome: US type 1 (US1) - characteristics include: profoundly deaf from birth do not usually benefit from hearing aids severe balance problems vision problems begin by age 10 blindness eventually occurs US type 2 (US2) - characteristics include: moderate to severe hearing problems usually benefit from hearing aids use speech to communicate normal balance retinitis pigmentosa begins in teenage years US type 3 (US3) - characteristics include: born with normal hearing hearing problems develop in teenage years near normal balance deafness by late adulthood retinitis pigmentosa begins around puberty blindness by mid-adulthood How is Usher syndrome diagnosed?

37. Usher Syndrome usher syndrome. From a pamphlet by the National Institute on Deafness and OtherCommunication Disorders What Is usher syndrome? What Causes usher syndrome? http://www.jwen.com/rp/ushers/ushers.html

Usher Syndrome From a pamphlet by the National Institute on Deafness and Other Communication Disorders What Is Usher Syndrome? Usher syndrome (US) is the most common condition that involves both hearing and vision problems. A syndrome is a disease or disorder that has more than one feature or symptom. The major symptoms of US are hearing impairment and an eye disorder called retinitis pigmentosa, in which vision worsens over time. Some people with US also have balance problems. There are three different types of US. Although it was first described by Albrecht Von Graefe in 1858, US was named for Charles Usher, a British eye doctor, who believed that this condition was inherited or passed from parents to their children. Who Is Affected by Usher Syndrome? More than half of the estimated 16,000 deaf-blind people in the United States are believed. to have US. What Causes Usher Syndrome? What Are the Types of Usher Syndrome? The three types of US are called US type 1 (US 1), US type 2 (US2), and US type 3 (US3). US 1 and US2 are the most common types of US. Together, US 1 and US2 account for approximately 10 percent of all cases of children who are born deaf. What Are the Characteristics of the Three Types of Usher Syndrome?

38. Usher Syndrome - Otolaryngology Health Guide Definition, types, diagnosing and treatment for usher syndrome, a commonhearing disorder. Otolaryngology. usher syndrome. What is usher syndrome? http://www.umm.edu/ent/usher.htm

Otolaryngology Health Guide Ear, Nose, and Throat Disorders... Balance Disorders... Hearing Disorders... ... Index Related Resources Within UMM Otolaryngology Otolaryngology Usher Syndrome What is Usher syndrome? Usher syndrome is an inherited disorder that involves both a hearing impairment and a vision impairment called retinitis pigmentosa. Some people also have varying problems with balance. Usher syndrome is passed from parents to their child(ren) genetically. What are the different types of Usher syndrome? There are three types of Usher syndrome: US type 1 (US1) - characteristics include: profoundly deaf from birth do not usually benefit from hearing aids severe balance problems vision problems begin by age 10 blindness eventually occurs US type 2 (US2) - characteristics include: moderate to severe hearing problems usually benefit from hearing aids use speech to communicate normal balance retinitis pigmentosa begins in teenage years US type 3 (US3) - characteristics include: born with normal hearing hearing problems develop in teenage years near normal balance deafness by late adulthood retinitis pigmentosa begins around puberty blindness by mid-adulthood How is Usher syndrome diagnosed?

39. Page Removed Information About usher syndrome. What is usher syndrome? What are SymptomsSuggesting usher syndrome? Who is at Risk? Screening for usher syndrome. http://www.necdbp.org/usher.htm

This page was part of the old NEC site and no longer exists. Please wait 5 seconds to be redirected to the New England Center Deafblind Project home page.

40. Usher Syndrome Screening Low Risk Causes usher syndrome Screening. Low Risk Causes. Choose Print in your browser.Date. Child's Name_. http://www.necdbp.org/low_risk.htm

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