Our darling daughter, Lilliann June, was nine days past her due date when she was born on September 25, 2013. It was a long labor — 48 hours — but well worth the wait. While we were in the hospital, Ryan noticed that her left eye was red. The pediatrician wasn’t alarmed, but had the hospital’s ophthalmologist take a look. He mentioned that she may have an issue with cataracts and glaucoma. We’d only heard those words used for older people, so we didn’t pay too much attention, until we were referred to another ophthalmologist for further examination.
An estimated 100,000 people in the U.S. have retinitis pigmentosa. Retinitis pigmentosa (RP) is a group of related eye disorders that cause progressive vision loss. These disorders affect the retina, which is the layer of light-sensitive tissue at the back of the eye. Vision loss occurs as the light sensing cells of the retina gradually deteriorate. Initial symptoms include night vision problems and challenges with peripheral vision, or side vision. Individuals with RP may be diagnosed in early childhood or not until they are adults.
If your child or someone you know has been diagnosed with retinitis pigmentosa, here are 5 points that may help you understand this condition:
When a child is diagnosed with a serious eye disorder, it can be extremely unsettling to both parent and child. The parent’s first challenge is to learn about the disease, its treatment, and what this means for the child’s eyesight. It’s understandable that parents often feel alone in their struggle and are unsure and anxious about what lies ahead.
A group of physicians at the University of Michigan Kellogg Eye Center want to help parents find the resources they need — whether these are aids for low vision or advice on navigating the school system. Even more important, we realize that parents can benefit greatly from discussing shared experiences with others in a group setting. It gives them the opportunity to learn about how others in the same situation are handling challenges.