TREATMENT FOR USHER SYNDROME

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There is no known cure for Usher syndrome, but there are ways to manage its effects on hearing, balance, and vision.

The most efficient treatment plans involve early identification and intervention through tailored educational programs to prepare the individual for employment and independent living. Educational programs for Usher consider the severity of the hearing and vision loss as well as the child’s age and abilities.

Treatment for hearing loss may include hearing aids, assistive listening devices, cochlear implants, American Sign Language, and speech therapy.

Treatment for balance difficulties may include physical and occupational therapy and orientation and mobility (O&M) training. O&M training teaches the individual to get from point A to point B. It also helps him or her strengthen muscles, particularly the core, to improve balance.

Treatment for vision loss may include Braille instruction, auditory training, and low-vision services. Provided by an optometrist, low vision services can include the following: training to use optical and electronic devices correctly; training to help use remaining vision more effectively; and improving lighting and enhancing contrast.

Additionally, a high dose of vitamin A may slow retinitis pigmentosa, but not cure it, per the results of a long-term clinical trial supported by the National Eye Institute and the Foundation for Fighting Blindness. Researchers recommend that most adult patients with the common forms of RP take a daily supplement of 15,000 IU (international units) of vitamin A under the supervision of their eye care professional. As patients with type 1 Usher syndrome did not take part in the study, high-dose vitamin A is not recommended for them.

Sources: American Foundation for the Blind; National Eye Institute; National Institute on Deafness and Other Communication Disorders