You may be at this website because you or someone you know was diagnosed with Retinitis Pigmentosa (RP) and you want to know what this means. This page is written by someone who has RP and is going to try to explain what it is and what it means to you in a simple manner.
What is RP?
RP is a group of disorders that affect the retina. The retina is in effect the screen where images from the eye are sensed and then sent to the brain. The retina is crucial to our ability to see. It is made primarily of Rod and Cone cells. The Rods are the cells that control our ability to distinguish light and are primarily located in the outer or periphery of the retina. RP damages these cells and the first symptom most people notice is night blindness. From there they will likely notice a shrinking in their peripheral vision. In later stages the central vision is affected causing distorted or blurry vision. In some cases people with RP can go totally blind. This is rare but possible.
How do you get RP?
RP is a genetic disease. A malfunctioning gene causes RP. Though this can happen spontaneously, most RP sufferers inherited the condition. There are anywhere from 60 to 120 gene variants of RP. The actual number is not completely known since all the genes that cause RP have not been discovered. As someone who was diagnosed in the early 1980s, the notion that so many genes have been identified, is amazing. Back then none of the genes had been identified.
Is there a cure for RP?
I'm sorry, there is not. Treatments are being worked on at a very rapid rate. Rapid rate being a relative term for medical advances. One treatment that targets one specific genetic variant has been approved by the FDA. It affects the RPE65 gene and is only helpful to those who have that variant. There are other gene therapies that target other genes as well as being gene agnostic (meaning they target all variants) are in clinical trials. Further there are beginnings of trials using stem cells to replace or restore function to retina cells. And there are gene modifier therapies that change the function of cells in the retina to act as photoreceptors. Photoreceptors are the Rods and Cones cells in the retina. All of these are in some level of clinical trial but only the one has been approved by the FDA as of early 2025.
Please browse through the other parts of this website for more information on RP.