RP varies a lot. It's not one condition caused by one gene but a family of conditions with some similar presentation. Depending on which variety you have, things can proceed quite differently. The most common presentation is a later diagnosis with night vision going first, then peripheral vision, and in those cases you tend to retain useful vision in your lifetime, I think. On the other hand I have RP, am 33, and am way past 20/800 with no central vision.

If you haven't looked into it, look into Vitimin A and Omega 3 which may (evidence is not amazing) slow progression. I'm also starting to think based on a rat study and some of my own experience that weed is good for RP.

I think the rate of decline can vary depending on genetics. I know you can supposedly get genetic testing done for free, but every time I try I can’t figure out how to get it or who I need to contact to make it happen; the system is just confusing to me for some reason.

Personally, I found out before five years of age. There have been sharp declines in my vision in between longer periods of relative stability. I have usable central vision but close to zero peripheral. I use a white cane or a guide dog to get around and learned braille but do not have to rely on it. I don’t remember what my vision was like as a child or young adult, but I know I could have benefited from mobility aids and specialized training much earlier than the age of 18 (when I sought it out for myself). It would be worth visiting a retina specialist just to get a sense of what resources are out there for you!

My grandmother has RP and was diagnosed pretty young around 12 or 13. She is 62 now and has some vision left and gets around well. I havent done that much research but I do know my grandma has lived a long and happy life and hasnt lost all her vision. Keep your head up! It's tough and scary but you've got this :) I hope you can get some good information and put your mind to ease! :) if you ever need to talk feel free to message me.