I have RP also. Everyone progresses differently. Hopefully it will stay stable for you.

When I was a kid my family was already aware that RP was running in our family. My grandpa lost his vision entirely, my mom’s vision is still okay enough for her to go out during the day time.... I started wearing glasses when I was 6 and ever since we were aware and conscious of getting my vision tested to make sure I didn’t have RP. I lived in Honduras up until I was 14 and they hadn’t seen anything strange. When I moved to the US they did some testing and they diagnosed me as well with RP. This was back in 2013. I am 23 now and my vision hasn’t gotten that bad. I am starting to notice I struggle more with certain lighting conditions but other than that I would say my vision hasn’t really changed. Some doctors recommend staying away from certain foods and have a healthier diet since it helps with vision in general. I hope you are doing well and your vision doesn’t change any time soon! There are plenty of clinical trials and gene therapy studies being done all over the world so don’t let RP get to you.

Side note: it’s nice to meet other RP fellows :)

RP is a blanket condition that covers many different variations. I think they have slreadh discovered hundreds of genes that can be a cause of RP—some are recessive (meaning both parents care the gene(, some are dominant (meaning one one parent needs to pass on the gene) and some are X-linked (meaning they are found on the X chromosome). You don’t really need to know all this, but it gives you an idea that RP can vary from person to person. I have no family history so I won the “jackpot” that both my parents gave me the gene. I was diagnosed at age 9 and I had two periods in my life where
I noticed significant differences (in my late teens/early 20s and again now in my mid 30s). However, I’ve met people who didn’t start noticing night blindness and weren’t diagnosed until their 30s

Having said all that, the unfotunate thing about RP is that no one knows if, when or how vision loss occurs. It is okay to be nervous and a bit scared about the future since no one likes the unknown. But the good thing is that RP is fairly gradual so one can adjust over time as things get harder. Right now, what scares you the most is the worst case scenario, and you’re thinking about it from the perspective of going from all to nothing. But if and when it happens, you’ll learn to adjust, especially if you seek out help from organizations and government services that are there to help people to learn independent living.

I grieve what I am losing sometimes, but I can’t let it stop me from living my best life. Don’t let the fear of the future or anyone who tries to tell you to do something “practical” stop you from going for what you want. I had a social worker in an institute for the blind tell me not to go to college for fine arts and art history and to do something practical. I left that meeting and cried, but I didn’t listen to him. I ended up going to college and got my defeee, and I have studied abroad in Europe twice during my undergraduate years and got my Master’s degree in the UK (I’m from the US) all while having RP. I even took my guide dog with me to the UK and she walked across the graduation stage with me!

Is life more challenging sometimes? Yes, but given the right tools and skills, you can lead an amazing life, even if it isn’t the same one you thought you would have. Just give yourself the patience and grace to know it is hard, it can be sad, but your sight doesn’t need to hold you back. I wish you the best of luck!

I first started noticing my vision loss in middleschool at around age 14. For some poeple puberty can cause the vision loss to progress exponentially. Not sure if thats what happened with me but yea with RP your vision worsens with time. Youre only 12. At 12 I did not imagin I wouldbe legally blind at 26 years. But every case is different. Some lose their vision very slowly while some lose it quite quickly. Since you have RP I would ask to get a genetic test to see if you qualify for the Luxturna treatment.

Yeah, definitely about the strain. I’m having usher 2, but have noticed my vision has gone really bad, and I kinda think it may be because of high levels of stress and anxiety. Maybe that can have an influence

It depends on the strain. Mine has been stable but I used to have a little night vision. It’s gone now. My field of vision is about two thumbs up with arms sticking straight out. Evidently thirties are when it deteriorate for men. Scared spotless of lights out

Depending on what form of RP, the progression can be different speeds. Do you know what kind you have?