Usher Syndrome (cont.)
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How is Usher syndrome treated?
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Currently, there is no cure for Usher syndrome. The best treatment involves early identification so that educational programs can begin as soon as possible. The exact nature of these programs will depend on the severity of the hearing and vision loss as well as the age and abilities of the person. Typically, treatment will include hearing aids, assistive listening devices, cochlear implants, or other communication methods such as American Sign Language; orientation and mobility training; and communication services and independent-living training that may include Braille instruction, low-vision services, or auditory training.
Some ophthalmologists believe that a high dose of vitamin A palmitate may slow, but not halt, the progression of retinitis pigmentosa. This belief stems from the results of a long-term clinical trial supported by the National Eye Institute and the Foundation for Fighting Blindness. Based on these findings, the 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 in the palmitate form under the supervision of their eye care professional. (Because people with type 1 Usher syndrome did not take part in the study, high-dose vitamin A is not recommended for these patients.) People who are considering taking vitamin A should discuss this treatment option with their health care provider before proceeding. Other guidelines regarding this treatment option include:
In addition, according to the same study, people with RP should avoid using supplements of more than 400 IU of vitamin E per day.
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Usher Syndrome - Diagnosis Question: What types of tests or exams led to a diagnosis of Usher syndrome in your child or relative?
Usher Syndrome - Treatment Question: What kinds of treatment has your child received for Usher syndrome?
Usher Syndrome - Characteristics Question: What type of Usher syndrome does your child have? Please describe symptoms or characteristics.