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New Usher Syndrome Resource

Usher Syndrome is an inherited degenerative disorder characterized by a hearing impairment and gradual vision loss

According to National Institute on Deafness and Other Communication Disorders, as well as National Institutes of Health, Usher Syndrome is the most common condition that impacts both hearing and vision. Approximately 20,000 people in the United States and 100,000 worldwide suffer from this debilitating condition.

There are three types of Usher syndrome, ranging in severity and progression. Type 1 children are profoundly deaf at birth and have severe balance problems. Many of them get little or no benefit from hearing aids.

Children with type 2 Usher syndrome are born with moderate to severe hearing loss and normal balance. Most of these children can benefit from hearing aids and communicate orally.

Type 3 children have normal hearing at birth, but both hearing and sight get progressively worse over time. They may also develop balance problems as they grow.

In the United States, types 1 and 2 are the most prevalent, accounting for approximately 90-95 percent of all cases.

No cure exists at this time for Usher syndrome and the currently available treatments include hearing aids, cochlear implants, communication methods such as sign language and auditory training, Braille instruction or low-vision services, among them.
However, research currently underway at two U.S. universities is looking into the pathology behind this disease and possible cures.

Recently the National Eye Institute and the National Institute on Deafness and Other Communication Disorders launched a joint online resource devoted to Usher Syndrome: www.ushersyndrome.nih.gov.

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