There are no hard and fast rules for when and what to explain to a child with an early onset or juvenile retinal degeneration. A child's need for information varies, depending on age and maturity. Although children are often very perceptive and quick to sense that they have a visual problem, they may be able to absorb only a little information at a time about it. It is usually best to answer their questions as frankly and positively as possible, without offering more information than your child has requested at the time, being sure to revisit the issue as your child matures.

It is important to emphasize positive things to children: that they will probably retain some usable vision for many years; that scientists are working hard to understand and find treatments for Macular Degeneration; that there are many assistive devices available to help them manage life with vision loss. Help your child to understand that while visual impairments may impose some limitations - driving a car is one example - the condition should not be used as a crutch or an excuse for not setting and reaching reasonable goals.

You can reassure your child about two concerns that are frequently expressed, Macular Degeneration will not change the appearance of one's face or eyes. And most children with retinal degenerative diseases can complete their education in their local school system.