Since RP is a genetic disorder; our parents both unknowingly carried the gene, which left us with a 25% chance of having RP. As chances often have their way, we were diagnosed with RP when we were 5 years old, at which time we had already lost a significant portion of our peripheral vision. Since vision loss occurs at such a slow pace, people with RP often adjust to the vision loss in such a way that they do not notice the changes at first. So, while it’s hard to tell how much vision we’ve lost since we were first diagnosed, our opthamologist visits have confirmed that, while our fields have gotten slightly worse over time, our vision has been fairly stable.
Our visual fields are both at around 4-5 degrees (out of 180), so it’s kind of like looking through a tiny straw, making things such as driving and playing sports nearly impossible. Our night blindness and poor depth perception make it pretty difficult to walk in dim-lit restaurants, outside at night, etc. We have been able to “hang on” to our central vision in the middle of that “straw”, however, so we are able to read large print when the contrast is high enough. We also have held onto our side vision, so it’s like looking at a puzzle where the frame of the puzzle is put together, along with a tiny piece at the center of the puzzle, but there are various pieces missing in between. These “missing pieces” don’t look black or like anything really – they just aren’t there.