Vision Conditions with Usher Syndrome

​​​Kristal Platt, M.S., C.G.C.

There are some recommendations to slow the progression of the eye problems seen in Usher syndrome. It is thought that light is damaging to the eyes of individuals with Usher syndrome. Therefore it is very important that children and adults with Usher wear sunglasses even on cloudy days. It has also been suggested that individuals consider wearing sunglasses indoors as well and avoid bright lights. Treatment of retinitis pigmentosa with Vitamin A has been controversial. Some experts recommend high doses of Vitamin A while other experts are concerned about the potential damage it can do to the liver. In addition, it is recommended that individuals with Usher have two helpings of cold water fish per week. These fish include tuna, salmon sardines and mackerel which contain DHA which is believed to help people with retinitis pigmentosa. Individuals should continue to see their ophthalmologists (eye doctor) because they can develop complicating eye conditions that can be treated.

Many people with Usher syndrome type II and III will have usable vision into their 40's, 50's, and even 60's; however, "usable" vision does not necessarily mean most efficient or safe vision. They may continue to do tasks with declining vision but forget that most tasks can be done with no vision at all. Then once their vision is perceived to be bad enough they completely stop doing the task instead of learning how to do the task in a different way. For instance, they may use a device which allows them to see a computer screen more easily but are reluctant to use a screen reading device that may have been more efficient and less straining for them to use all along.