When describing Retinitis Pigmentosa to people I have an easy, canned answer. I say that it’s a degenerative eye disease and how the first to go is night vision and peripheral vision. Then I say it’s like looking through a cone or having tunnel vision. Like this:
I use this explanation because it quickly gets the point across and it’s a common way of describing the disease. The image above is the one you see on just about every site describing RP.
However, it’s actually not that simple.
Jared will tell you that it’s not a complete blackout around his central vision. In fact, what we learned from a Vision Specialist is that the brain actually fills in what it thinks is supposed to be there. It’s not a completely clear picture and there is some darkness but it’s amazing what the brain is doing to compensate for the loss of vision. The problem is that the brain isn’t always correct. He was just telling me that last night the he was standing in front of one of his buddies and didn’t know that another friend was standing right next to him until he started talking. Can you imagine?
Another problem is contrast. If something isn’t starkly contrasted (i.e. black on white) then the image is lost. For instance, we went to see a movie the other night and so much of the movie took place at night. Even though the screen was enormous, the dark images on a darker background meant that he couldn’t see half of the movie. Bummer.
Recently on the Foundation Fighting Blindess Facebook page a ‘fan’ with RP posted a link to this video stating that it was the best he had seen yet of explaining his RP. I showed it to Jared and he agreed.
Keep in mind everyone’s experience of RP can be unique. This post is specifically to address Jared’s experience and where he is currently with the disease.
Do you know someone with RP or do you have RP? Is your experience similar? Do you have another way of describing it?