Accidents Happen: A Guide to Children's Emergencies

Being told that your child has any sort of congenital disease can be traumatic. If your doctor has informed you that your child has retinitis pigmentosa, you are probably worried — and you probably have a lot of questions. The good news is that this inherited eye disorder does not cause any pain. However, the condition will continue to affect your child for the rest of his or her life — so it's important that you know the basics.

What is retinitis pigmentosa?

Retinitis pigmentosa is a genetic condition. It's inherited through a recessive gene, which means that both parents can be carrying the gene without having the condition — but their child can be born with the condition. Even though most children don't start showing symptoms until they're a few years old, they are born with the disease — nothing you do or do not do when they are infants and toddlers can cause it.

Essentially, the disorder affects the pigments in the retina of the eye. In a normal person, the photoreceptor cells in the retina contain pigments that allow them to capture light. In someone with retinitis pigmentosa, these pigments are not produced — at least not in as large a quantity as they should be. This leads to visual difficulties.

What symptoms does the disease cause?

The symptoms are often first noticed when a child is a few years old and begins struggling to see in the dark. Your child may be unreasonably afraid of the dark or may run into things when the light is a bit dim. As your child grows older, the symptoms grow more severe. Vision becomes blurry even in the daytime. Your child may have trouble distinguishing between shades and colors and may not see the finer details in items. Over time, the visual field narrows, too. By the time your child reaches adulthood, he or she may only be able to see directly in front of them. Eventually, he or she will lose most or all of their sight.

What can be done about the disease?

There is no cure for this condition. However, you can work with an eye doctor to ensure your child has the best assistive sight devices to allow them to see and function in daily life for as long as possible. Glasses may be suitable at first, and larger, binocular-like magnifying devices may come in useful once the disease has progressed.

Having your child diagnosed with retinitis pigmentosa can be scary. Do not be afraid to ask the eye doctor any and all questions you have about this condition. With the right management and visual devices, your child can go on to live a long and healthy life.