1. The Usher Syndrome Page An in depth article by Mary Guest, Head of Usher Services at Sense, about usher syndrome. Includes detailed description of what it is, the symptoms, genetics, transmission, the problems associated with it and what can be done. http://www.deafblind.com/usher.html

Go Back To info Page. Usher Syndrome 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. Retinitis Pigmentosa, This term describes not one disease but a group of hereditary diseases of the retina. The retina is the light sensitive tissue inside the eye in which the first stages of 'seeing' take place. With RP the retina slowly degenerates and loses its ability to transmit pictures to the brain. In advanced stages characteristic clumps of pigment appear on the retina and can be seen through an ophthalmoscope. Symptoms

2. Retinitis Pigmentosa - Questions A description of this disease from Retinal Preservation Foundation of South Africa. http://www.rpsa.org.za/a6.htm

What is Usher Syndrome? Usher Syndrome is Retinitis Pigmentosa accompanied by hearing loss. The hearing loss is congenital, stable and usually quite severe, although severity can vary in different individuals. Hearing can usually be assisted by modern electronic aids, hearing-assisted telephones, TV aids, etc. Usher Syndrome is a recessively inherited condition. One of the greatest difficulties experienced by sufferers is increased isolation as the restrictions on both spoken and visual communication increases. Contact the Retinal Preservation Foundation for further information. Created and maintained by Intekom works Intekom

3. Usher Syndrome [NIDCD Health Information] This fact sheet provides a brief, easyto-understand reference for the public on the communication disorder known as usher syndrome. http://www.nidcd.nih.gov/health/hearing/usher.asp

Change text size: S M L Home ... Hearing, Ear Infections, and Deafness Usher Syndrome On this page: What is Usher syndrome? Who is affected by Usher syndrome? What causes Usher syndrome? What are the types of Usher syndrome? ... Where can I get additional information? What is Usher syndrome? Usher syndrome 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 Usher syndrome are hearing impairment and retinitis pigmentosa, an eye disorder that causes a person's vision to worsen over time. Some people with Usher syndrome also have balance problems. There are three general types of Usher syndrome. Although the syndrome was first described by Albrecht Von Graefe in 1858, it was named for Charles Usher, a British eye doctor, who believed that the condition was inherited or passed from parents to their children. Top Who is affected by Usher syndrome?

4. The Usher Syndrome Page An in depth article by Mary Guest, Head of Usher Services at Sense, about usher syndrome. Includes detailed description of what it is, the symptoms http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

5. Usher Syndrome: New Insights Lead To Earlier Treatment [NIDCD Health Information Children with usher syndrome can now benefit from better treatment options , thanks to recent discovery of a method to identify this disorder at birth. http://www.nidcd.nih.gov/health/hearing/usher_new.asp

Change text size: S M L Home ... Hearing, Ear Infections, and Deafness Usher Syndrome: New Insights Lead to Earlier Treatment On this page: Early detection leads to earlier treatment A Puzzling Disorder, Passed from Parents to Children Zooming in on the Genetic Component Earlier Screening Is Best Medicine ... Where can I get additional information? Early detection leads to earlier treatment Children with an inherited hearing and vision disorder known as Usher syndrome can now benefit from better treatment options, thanks to a recent scientific discovery of a method to identify this disorder at birth. Those with Usher syndrome type 1 are usually born deaf or hearing-impaired in both ears. Vision problems often don't appear, however, until a child is olderaround age 10 for those with the most severe form of Usher syndrome and around age 20 for those with a less severe form. The disorder takes many by surprise. The parents of deaf children often do not know that they both carry the genes that cause Usher syndrome and its inevitable blindness in their children who inherit the Usher mutation from both parents. Approximately 5 percent of children born deaf or hearing-impaired have Usher syndrome, or about one in 25,000 of all people in the United States. An international team of researchers, zeroing in on one of the several genes thought to be responsible for Usher syndrome, found a telltale mutationa part of the gene not carrying out its biological orders properly. This mutation (called R245X) appears to account for a large proportion of the most severe form of Usher syndrome in the Ashkenazi Jewish population, a Jewish group descended from eastern European ancestors.

6. A-Z To Deafblindness Information about the condition, with an online guide to the Manual Alphabet, and a directory of resources, equipment, organisations, and http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

7. TARP Usher Syndrome The homepage of TARP, the Texas Assocaition of Retinitis Pigmentosa. A nonprofit support group for people with RP and other retinal diseases. http://www.geocities.com/HotSprings/7815/tarp6.htm

Main Founder Ushers Syndrome Getting Support ... Contact Us This page last updated 12/11/97 7:49:00 PM Created by John Wenberg http://www.jwen.com What is Usher Syndrome The Usher syndromes (USH) are a large group of inherited disorders which combine simultaneously both the hearing impairment and progressive loss of vision (similar to "Retinitis Pigmentosa" [RP]). Type 1 (USH1) is characterized by a congenital (present at birth), severe to profound and preverbal deafness, absent vestibular deterioration (balance) function and early onset of an RP-like retinal deterioration (typically by age 5 or 6 years and almost always before age 10 years.) Type II (USH2) has a milder (post-verbal) hearing loss, apparently present from birth, and a later onset (or detection) of an RP-like retinal degeneration (typically between ages 10-20 years). Balance functions are normal and stable, but the hearing impairment deteriorates very slowly, by some estimates an average of about 1 decibel (Db) per decade. Although still controversial, the existence of at least a third type (USH3), distinguished from USH2 by the rapid and progressive nature of its hearing loss, has been suggested. USH3 seems to account for about 40% of Usher syndrome patients from eastern Finland; there is good genetics evidence that the gene for USH3 is located on a different chromosome than the locations of USH1 and USH2.

8. Dobrodosli / Welcome @ Dodir's Homepage About Croatian deafblind people, news, information about deafblindness and usher syndrome, photo album. Croatian, English http://www.dodir.hr

Posjetitelj / Visitor No:

9. Usher Syndrome / Family Village Where to Go to Chat with Others. UsherFriends A Friendly Chat Group for People with usher syndrome The Deaf-Blind List http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

10. RetNet - Retinal Information Network Provides tables of genes causing inherited retinal diseases, such as retinitis pigmentosa, macular degeneration and usher syndrome, and related information. http://www.sph.uth.tmc.edu/Retnet/

Table of Contents: Diseases: Cloned and/or Mapped Genes Causing Retinal Diseases Summaries: Summary Tables ( Genes Diseases Complex Diseases or ... Symbols: List of Disease Symbols References: References for Disease Tables What's New: New and Updated Disease Genes RetNet provides tables of genes causing inherited retinal diseases, such as retinitis pigmentosa, macular degeneration and Usher syndrome, and related information. This information is provided to the research community and other interested individuals for research purposes only. The information should not be used for medical or commercial purposes. Although we strive for accuracy and completeness, we cannot guarantee that all information is correct and complete. We welcome comments and suggestions RetNet , the Retinal Information Network, is a service of the Laboratory for the Molecular Diagnosis of Inherited Eye Diseases, a joint program of ... The Hermann Eye Center Dept. of Ophthalmology and Visual Science , and The Human Genetics Center School of Public Health , at The University of Texas-Houston Health Science Center RetNet maintenance and design: Stephen P. Daiger, PhD

11. The Foundation Fighting Blindness Macular Degeneration. Retinitis Pigmentosa. Stargardt Disease. usher syndrome. Other Retinal Diseases. Retinoschisis. Science and Research. http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

12. Driving With Usher Syndrome. Driving with usher syndrome. compiled from conversation on the DeafBlind List. http://www.deafblind.com/driving.html

Go Back to The Archives Page. Driving with Usher Syndrome. compiled from conversation on the Deaf-Blind List by Kate Moss, TSBVI Deafblind Outreach. One of the many issues parents of young adults with Usher Syndrome and other conditions that result in low vision face is whether or not to let their son or daughter get their driver's license. This topic was discussed at great length recently on the Deaf-Blind List. Because I benefited so much from this discussion, I thought it would be worth sharing excerpts with our SEE/HEAR readers. My thanks to all of the Deaf-Blind List members who participated in this discussion and who were willing to share that discussion with those who do not have access to the List. The discussion in its entirety is available through the Deaf-Blind List archives if you would like to read more. You may access those archives at DB-Link at http://tr.wosc.osshe.edu/DBLINK 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:

13. TARP Usher Syndrome 97 74900 PM Created by John Wenberg http//www.jwen.com. What is usher syndrome The usher syndromes (USH) are a large group of inherited http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

14. Usher Syndrome / Family Village usher syndrome A Condition which affects Hearing and Sight What is usher syndrome? usher syndrome New Insights Lead to Earlier Treatment http://www.familyvillage.wisc.edu/lib_ushe.htm

Usher Syndrome Who to Contact Where to Go to Chat with Others Learn More About It Web Sites Who to Contact Usher Family Support 4918 42nd Avenue, S Minneapolis, MN 55417 kadbmn@aol.com Where to Go to Chat with Others Usher-Friends A Friendly Chat Group for People with Usher Syndrome The Deaf-Blind List Learn More About It Usher syndrome From the National Institute on Deafness and Other Communication Disorders The Unique Educational and Services Needs of Children With Deaf-Blindness Usher Syndrome Usher Syndrome - A Condition which affects Hearing and Sight What is Usher Syndrome? ... Usher Syndrome: New Insights Lead to Earlier Treatment Web Sites The Deafblindness Web Resource Usher's Syndrome Page DB-LINK - The National Information Clearinghouse on Children Who Are Deaf-Blind The Deaf-Blind Association - Australia Hereditary Hearing Loss Homepage Back to [ U - V Family Village Home Library Coffee Shop ... Information Last Updated 11/22/2004 by familyvillage@waisman.wisc.edu Document Source: http://www.familyvillage.wisc.edu/lib_ushe.htm

15. Home Page Voluntary organisation run mainly by people with usher syndrome, promoting the interests and wellbeing of all people who have Usher and their families. Information on activities and events. http://www.usheruk.org.uk/

Due to circumstances beyond our control, we regret that this Usher UK website is closed until further notice. Please use the Sense and UsherLife links below for further information on Usher syndrome and the Usher community in the UK. Thank you.

16. A Deafblindness Web Resource Information about usher syndrome. usher syndrome is a common cause of deafblindness, and consists of deafness and Retinitis Pigmentosa. http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

17. Page Not Found - Boys Town National Research Hospital National Usher Study Treatment Center Information About usher syndrome Insights from our Research Leaders Patient Profiles http://www.boystownhospital.org/parents/info/genetics/usher.asp

@import "/css/complex.css"; This site was designed for more recent browsers, but it is accessible to any browser or Internet device. To view the site correctly please update your browser. Click here for a list of more recent browsers. Each year thousands of children with hearing loss and disorders affecting their communication abilities come to Omaha from across the U.S. for care and treatment at Boys Town National Research Hospital. @import "/css/rightcol.css"; What's New Contact Us Pediatrics Surgery Center ... Donate by Mail Page Not Found Sorry, we couldn't find the page you were looking for: http://www.boystownhospital.org/parents/info/genetics/usher.asp We have recently redesigned our Web site and tt has either been moved or deleted. Please use the navigation on the right side of this page to find what you were looking for. You may also search for your page using the form below. Search the Web Site: Search On : All Words Any Words Phrase Searched documents in total.

18. Usher Syndrome [NIDCD Health Information] This fact sheet provides a brief, easyto-understand reference for the public on the communication disorder known as usher syndrome. http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

19. Information About Usher Syndrome - The National Center For The Study & Treatment The symptoms of retinal disease follow this pattern in usher syndrome but may be Many people with this type of usher syndrome say they get little or no http://www.boystownhospital.org/Usher/information.asp

@import "/css/complex.css"; This site was designed for more recent browsers, but it is accessible to any browser or Internet device. To view the site correctly please update your browser. Click here for a list of more recent browsers. Geneticists at Boys Town National Research Hospital are playing an international role in identifying genes responsible for Usher syndrome. @import "/css/rightcol.css"; What's New Contact Us Pediatrics Surgery Center ... Donate by Mail Information About Usher Syndrome Genetics and Deafness - Usher Syndrome About 3-6 percent of all deaf children and perhaps an equal number of hard-of-hearing children have Usher syndrome, which itself is more than one genetic condition. On the basis of clinical findings, at least three types exist (Table 1). Gene localization studies show that each clinical type is due to several different genes located on different chromosomes. The most important clinical distinctions are based on the differences in hearing and balance. The RP may look the same even to an experienced eye doctor except that the symptoms seem to begin earlier in Type I. Usher syndrome is one of several conditions in which both hearing loss and retinitis pigmentosa (RP) are present. In this article, the symptoms of RP and the various forms of Usher syndrome will be discussed. Suggestions will be given on where to go for further diagnosis and information. Table 1: Types of Usher Syndrome Symptom Type I Type II Type III Hearing Loss Born deaf with profound hearing loss

20. RetNet - Retinal Information Network Provides tables of genes causing inherited retinal diseases, such as retinitis pigmentosa, macular degeneration and usher syndrome, and related http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

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