I was diagnosed with RP at age 53. Symptoms started maybe 18 months earlier.

There's no history of RP in my family. That, combined with the very late onset, make the doctors think I may be the source of a new genetic mutation. The genetic test was inconclusive. They looked at the 322 genes known to cause or contribute to RP and all of mine were normal, meaning there's a 323rd gene somewhere, but the doctors have no idea where to look for it.

My RP is progressing much faster than normal. From first symptoms until legal blindness only took a year, and my eyesight has gotten a whole lot worse since then. I'm estimating I have about another year or two until total blindness sets in. What takes decades in most RP people is taking years in my case, but I had great eyesight into my fifties, so I guess it's a fair tradeoff.

My visual radius has stabilized. I've got about 12 degrees horizontally and maybe 8 or 9 degrees vertically, and that hasn't changed since last summer. If those numbers don't mean much to you then just know when I hold my hand out at arm's length and splay my fingers out I can see three of them at once. The other two fingers are outside my field of vision. Within that little radius my acuity is still strong. But the darkness keeps getting worse. Each week the grocery store seems darker than the week before, and sometimes my kitchen seems darker than it did the day before.

You know it's going fast when you notice the changes day by day and not just week by week.

I want to emphasize the doctors aren't saying I'll be totally blind in a year or two. They admit they don't know what will happen. I'm making that estimation on my own, based on my experience so far. Something could change and my eyesight could stop deteriorating. But if nothing changes I figure my vision loss is on pace to leave me with no light perception sometime in the next two years, based on how much I've lost already.

I was diagnosed with RP about 30 years ago. That was when every anomalous condition got that diagnosis. Less than ten years later, zero vision. Sorry to be a downer... Bright side, it hits everyone differently.

RP is actually a group of genetic disorders. The same genetic disorders can still present differently in different people. Some people will have a slower case, and others a faster cane. A few of my clients have gone totally blind from RP. Have you been monitoring your vision loss?

I was diagnosed with Usher type 2 at 19. Now I’m 33. 60 degrees of visual field at diagnosis, 9-10 degrees now. It’s been at around 10 degrees for 5-6 years and the ophthalmologist told me it will most probably stagnate. Life hasn’t changed much, the deterioration was very slow and in time, I had long periods to adapt. I still don’t need to use any assisting tech except the hearing aids and I’m doing the same job I wanted to do before the diagnosis. I had some accidents (not bad though) and I can’t walk alone at night except in very well lit areas but I can’t say RP deprived me of a normal life(with some limitations but fortunately they’re easy to overcome). This is just my experience. Advice:try to find the best solutions for you and don’t put your life on hold just because of RP.

My symptoms started at age 18, that is 13 years ago.
Now I have less than 10% field of view.

My doctor said that everyone with rp should prepare for blindness and just be happy when there's a small "peephole" left.

I’m no scientist, but from things I’ve read,it seems that after the rods die, the cones inevitably start to die. The progression is different for everyone though. The opposite is not always true. That’s why some people have cone dystrophy, but you don’t hear of rods-only dystrophy.

The best hope at some point lies with gene therapy.

I was diagnosed in my teens, now I'm your age and I still have a little under 10 degrees of vision and it doesn't seem to have gotten noticeably worse in the last 8 or so years

RP has a whole slew of genes that can cause the degeneration of rod photoreceptors. The way and the rate of those photoreceptors depend on the mechanism that affects them and how you inherited it. I knew I had issues with my vision since I was 15 but wasn't diagnosed until I was 27 years old and 10 years later I still have 20/25 vision. I have a recessive expression of this variant so that's what is causing my vision to stay intact for so long. If you can get genetic testing (it is free through Foundation Fighting Blindness), a genetic counselor might have more insight into the duration of your IRD. An extra plus is that if there might be clinical trials in the future to help understand the disease better and you might be a potential candidate. BTW the $1 on this page will get you to the free testing. Also, I'm a patient scientist trying to discover my cure for my RP so I've been trying to build the preclinical pathway for patients with retinitis pigmentosa and other rare diseases. I hope this link helps and let me know if you need help connecting to someone.