If you are having difficulty seeing at night, and are hearing impaired, you may be experiencing the onset of Usher syndrome. Usher is an inherited genetic condition that results in the progressive loss of eyesight as well as deafness. It is also a condition that is often not diagnosed until later in life, which can result in major psychological impact on the individual.
According to the National Center for the Study & Treatment of Usher Syndrome at Boys Town National Research Hospital, there are three types of Usher syndrome (referred to as types I, II and III). Hearing and vision loss differs according to the type, and the gene location also differs.
Usher Syndrome Information Resources
Large-print resources are available online, and information kits are also available.
- Large-print resources: The Texas Association of Retinitis Pigmentosa offers a very large-print explanation of Usher syndrome. A large-print information kit is also available from the Australian DeafBlind Council.
- Web resources: Sense has downloadable publications on Usher and information on the genetics of Usher, types of Usher, and research into Usher.
- Bibliographies: An extensive bibliography on Usher syndrome is available from the National Information Clearinghouse On Children Who Are Deaf-Blind.
Personal Experiences with Usher Syndrome
I am not aware of any personal pages describing personal experience with Usher Syndrome. One person did describe his experience with Usher in honest detail on the website of the National Center for the Study and Treatment of Usher Syndrome at Boys Town National Research Hospital.
Support for People with Usher Syndrome
People with Usher syndrome, their families, and people who work with people who have Usher syndrome can exchange thoughts and ideas on the Usher Syndrome Mailing List.
