Usher Syndrome (cont.)
How is Usher syndrome treated?
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:
- Do not substitute vitamin A palmitate with a beta-carotene supplement.
- Do not take vitamin A supplements greater than the recommended dose of 15,000
IU or modify your diet to select foods with high levels of vitamin A.
- Women who are considering
pregnancy should stop taking the high-dose
supplement of vitamin A three months before
trying to conceive due to the
increased risk of birth defects.
- Women who are pregnant should stop taking the high-dose supplement of vitamin
A due to the increased risk of birth defects.
In addition, according to the same study, people with RP should avoid using
supplements of more than 400 IU of vitamin E per day.
Next: What research is being conducted on Usher syndrome? »
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