Vision Testing: Usher syndrome might go undiagnosed until the child or the child's parents notice a loss of night vision. The loss of night vision happens before the age of ten in Type 1, or during adolescence in Type 2. Vision testing includes a physical examination of the person's retina. The examination may detect changes in blood vessels, clumps of dead retinal cells, or a waxy appearance to the retina's surface. Visual field testing measures peripheral vision. An electroretinogram (ERG) is an examination that confirms the diagnosis of retinitis pigmentosa and also the retina's response to light. Due to the fact that the test requires insertion of a contact lens, general anesthesia is used in young children.
A pediatrician has the ability to answer a number of the questions parents of children with Usher syndrome have. The questions parents often have concern their child's physical growth and development. It is important to ask a pediatrician to refer you to vision and hearing specialists as soon as possible. The earlier a child begins working with these specialists, the more easily the child can learn to communicate with sign language, speak, and manage both vision and hearing loss.
While there is a good amount of research on Usher syndrome, a cure remains elusive. Treatment concentrates on helping the child to adapt to vision and hearing loss so they may enjoy life as much as possible. Options for treating Usher syndrome include the following:
A long-term study from the Foundation for Fighting Blindness and the National Eye Institute showed that high doses of Vitamin A palmitate may slow down changes in an affected person's eye because of retinitis pigmentosa. If you are considering giving your child Vitamin A, consult your child's vision specialist beforehand.
While there is currently no cure for Usher syndrome, children with the disorder can live full and happy lives with the assistance of training and educational programs that meet their needs. Early diagnosis of Usher syndrome is extremely important because the earlier a child receives the help they need, the better prepared they are to manage their vision and hearing loss.
The blue ribbon denotes Usher Syndrome awareness with Global Usher Syndrome awareness day falling on the 19th September.
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