Usher Syndrome:
Why is Early Identification Crucial?

  1. The gradual decrease in vision may be unnoticed by the individual, who may continue activities (such as driving or working in hazardous conditions) that cannot be continued safely. Another safety issue pertains to night blindness, usually the first manifestation of retinitis pigmentosa. A child who is night-blind can be at risk in any area where there is traffic or other dangers.

  2. The individual, parents, and teachers can plan for education, vocational experiences, and career planning, taking into account eventual visual difficulties.

  3. A diagnosis of Usher syndrome allows the family to consider genetic counseling and testing for other children in the family. Usher syndrome runs in families. Some families might choose genetic counseling and testing in order to reduce the risk of having other affected children as well as to reduce the risk of an individual with Usher syndrome having affected children. Other families might choose genetic counseling in order to plan for needed supports.

  4. The family and individual may choose to seek counseling and support to cope with the present and prepare for the future.

  5. Knowing about the visual impairment may influence decisions regarding communication. The individual and family will have the time necessary to gain skills and experience in communication techniques that will enable the person to continue to communicate with others even if a severe visual impairment occurs. For example, it may be easier for a person with Usher syndrome to learn tactile communication as a child rather than as an adult.