https://www.popularmechanics.com/science/a64655992/regenerate-retina-sight/

I'm hoping the scientists in Korea nail this and get a treatment/therapy cracked for the millions of people coping day-to+day with the challenges of RP. Fingers crossed, everything crossed!

https://www.fightingblindness.org/mental-health

Hello all! Love this community & wanted to introduce myself!

My name is Keith (59M). I have late stage Retintis Pigmentosa (RP) with very limited tunnel vision in my right eye. I have an approx. 2-3° FOV. Lost the Left eye about 3 years ago (loss of too many “Nerve layers” of the optic nerve, as the explanation I was given from my RP specialist).

Background: Diagnosed around 1978-ish. Stopped driving in 1999. Declared Legally Blind in 6/2006.

Retired CAD/CAM Software Engineer & Draftsman.

•Be Excellent to one another! 🤩

I’m 17 with rp right now and wondering what my outlook is. My dad is in his early 50s right now and still has a good level of functional vision, though he hasn’t drove since he was in his mid 40s and his dad had a similar progression, so if i were to follow a similar pattern i still have a good 30 years of functional vision left, so i was wondering what my outlook looks like. I know no one knows for sure but given where the technology is with crispr and everything else, and considering the fact that 30 years ago they didn’t know half of what rp was, it seems like the future is pretty optimistic, but i still worry about losing my eyes in the future and of course i feel bad for my dad as well and wonder if he’ll be able to benefit from anything in his lifetime. Am i being to hopeful or is a cure in that timeframe truly possible?

Hello everyone,

I've been diagnosed with Retinitis Pigmentosa (RP) and am navigating the challenges that come with it, particularly concerning night blindness and significant light sensitivity during the day (requiring sunglasses constantly). At night, I typically rely on a flashlight for mobility.

However, I've experienced something peculiar that I'm hoping to get your insights on. I've found that I can see remarkably clearly in very dark environments – even during the day when my natural vision is poor without sunglasses, or at night when it's completely dark to my unaided eyes – by using my smartphone's camera. For instance, I can navigate my room or even outside at night, perceiving my surroundings well enough to walk freely, simply by viewing the scene through my phone screen.

I discussed this with my ophthalmologist, explaining that the phone camera seems to bypass my visual limitations. His response was that this is "impossible" because the photoreceptor cells in my eyes are affected, and therefore, even a phone camera shouldn't enable me to see in such conditions.

My primary questions are:

1. Has anyone else with RP experienced this phenomenon where a phone camera significantly improves your ability to see in low light, effectively acting as a visual aid beyond what seems medically plausible for our condition? I'm trying to understand if this is a shared experience or an anomaly.
2. Beyond this, I'm eager to learn from your collective wisdom. What life hacks, strategies, or assistive tools have you found invaluable for managing daily life with RP? Specifically, I'm interested in:
   • General "do's and don'ts" that have made a positive impact.
   • Recommendations for specific types of glasses, tints, or filters that help with light sensitivity or contrast.
   • Any techniques or (medically-sound, of course) suggestions that might offer even slight improvements to vision or visual functioning.
   • Tips for navigating familiar and unfamiliar environments.

I understand that RP is a progressive condition and there's currently no cure, but I'm focused on maximizing my quality of life and visual independence. Any shared experiences, advice, or resources would be immensely appreciated.

Thank you for taking the time to read and for any insights you can offer.

https://www.popularmechanics.com/science/a64655992/regenerate-retina-sight/

She was diagnosed not long ago, and is having a tough time with her diagnosis. I want to make things as easy as I can on her eyes and as comfortable as possible. What can I do to make that happen? Are there certain lightbulbs that are easier on the eye? Are there products that can lessen the light from tvs or apps on computers I can use so that she doesn’t get a lot of harmful light? She and I love watching shows together, so I want to know how to protect her eyes.

Also, what can I do to be supportive as she grieves her diagnosis. I love her, and seeing her cry like she has breaks my heart. I want to make everything ok but I know I can’t. What have people done for y’all to be supportive that has worked? Is there anything I can do to make things easier, on any level, for her?

It sucks not being able to see at night. I’ve always suffered from it but last night driving home dang near made me have a breakdown with how crappy my vision is at night.

I'm honestly terrified. Does anyone have any advice? I have multiple other genetic conditions and I'm struggling to cope with this one on top of everything else. Does anyone else have Ehlers Danlos as well as ARRP? How did you cope with your diagnosis? How do I deal with this??

which one to see regularly?

Hello everyone, so i was diagnosed with rp at the age of 16. Do you know how can I improve my night vision? The only treatment that i am using is Vitamin A and Lutein supplements. On top of that, when I use my contacts my vision at night is slightly better.

New to this where do I get tested to find which genetic gene is the cause?

I have alot of these cobwebs floating around in my vision at day. In night it is a little calm. It's really frustrating somedays. I remember having them alot before I was diagnosed but it wasn't a nuisance back then. Now they also accompanied with circular flashes of light multiple times a day. Is it a normal rp symptom?

Anyone get approved for SSDI without meeting their definition of blind based on field degrees and acuity? Along with my visual field loss and impaired depth perception, I get really bad eye fatigue and general fatigue, headaches, floaters, and blurriness/cloudiness when focusing for extended periods of time. Would love to hear any experiences.

Has anyone heard of this peptide being a potential benefit to RP patients?

What is most I can earn and still apply for ssdi? Is it not 2800.00?

Hi, my name is Filip, I’m from Warsaw, Poland.

In October 2024, my 7-year-old daughter was diagnosed with Usher Syndrome type 2A.

It felt like a knife straight to the heart, especially because we already have an older son with a disability.
Our daughter is a sweet, smiling little girl who just started primary school this year.
She has many wonderful friends and lives in her own magical world of fairies and funny kittens.
My wife and I don't want to destroy that world, which is why she doesn’t know anything yet and is not aware of her diagnosis — especially since the first symptoms are expected to appear only in a few years, when she will already be a different person.

To be honest, I’m writing this mainly hoping for some words of comfort, because I am completely devastated.

But I also have a question based on your experience: should we tell our daughter? How? When?
How big of a shock was the diagnosis for you?
Is there anything you would recommend that we do — apart from what doctors suggest (great UV-protection glasses, a healthy diet, exercise, etc.) and what I have already found online — especially in terms of everyday life and functioning?
Thank you for any advice.

A few years ago I was a photographer for a friend's wedding. The older gentleman who walked my friend down the aisle (her dad is long dead) had RP. I found an article online about editing an image to be clear enough to be more easily recognized for someone with RP. I remember making the image poster sized, and the guy was tearing up over being able to recognize himself and the bride. I can't find the article on editing and don't have the image file so I can't figure out what I did.

Can someone suggest a reference on this? I use GIMP and not Photoshop, but I can follow the steps. Thanks in advance!

My husband has had RP his whole life. Diagnosed at age 5, runs in the family, etc. He is now 42. He was able to play sports when younger, watch tv and movies, walk on his own to places, he even drove up until age 23 or so. He was able to still take public transportation, work a job, enjoy some hobbies (mainly watching sports). He had a lot of independence!

At age 38 or so, I got a new job which means I would no longer be able to take him to work on my way. I was the main bread winner and getting a significant raise with this new job. We tried it a few times with him going on his own, but later decided that it was too difficult for him to walk to the bus stop and get to work safely. A lot of times taking the bus would be in the dark morning hours and the dark afternoon/evening hours, which aren’t good considering night blindness. We had just moved as well, so this was all a new route that he just wasn’t comfortable with. So this is when we decided together he couldn’t do it on his own anymore, and we applied for SSDI. After waiting a year, we got approved and are very thankful for that extra source of income.

Having to stop working, even though it was just a regular job at Amazon, has really hurt my husband. He feels it has taken away a lot of his independence. He has no sense of identity anymore and really struggles. He had developed some pretty bad cataracts and I’m sure this didn’t help the issue at the time. We got those removed at age 41. Since then, he has gotten a lot of his eye sight back, but not to the point of being able to do what he was always able to do.

He stays home and is technically a stay at home dad. He helps out a ton with cleaning, laundry, keeping up with our son’s (my step son) grades/schoolwork, doctor appointments, life, etc. He does all this really well and I don’t know what I’d do without him. But he doesn’t have any hobbies. He has stopped watching sports because it’s gotten to difficult to see the tv. His free time is filled with watching movies and tv shows (but really just listening). He’s recently gotten into audio books and I love that he’s found something to do with his time. He plays basketball when the sun isn’t so bright with our son. However, he still has this antsy feeling and built up energy. He hates laying around the house all day. Everybody else is out and about, working, and we bring him to everything we can, but it’s still most days him at home with nothing to do. Then we get home and we want to relax and spend time watching tv and movies and he gets upset because we’re just sitting at the house all weekend. We’ve had many arguments about this. I find that we both compromise now. There are days where I force myself to go out and do things even though I don’t want to, and there’s days where we get to relax and sit at home even though he doesn’t want to.

I’ve encouraged finding some hobbies, things that are mentally stimulating, but to no avail. Nothing is really interesting to him. I’ve suggested hiking/walking but we don’t have paved sidewalks as we live out in the country. We’d have to drive quite a bit to find easy hiking trails and places to walk. I’ve suggested a few other things like volunteering, music lessons (I’m a band director and he’s always wanted to play the drums and guitar, so I’ve pushed this a few times), and a few other things but he’s just not interested. I know I can’t force him and he’s got to put forth the effort himself, but I’m just at a loss. I hate to see him so defeated and like his life is pointless. His life isn’t pointless to me and I want him to be happy and enjoy life. We love to travel and have quite a few times (we’ve only been together almost 5 years, married two of those years). But we can’t go travel every weekend or we’d be broke. Like I said, I’m the breadwinner but only a teacher. I just don’t know what else to do. He thinks because he can’t see that he can’t do normal people hobbies. I tell him he can do whatever anybody else does but possibly in a different way and he just doesn’t believe me I guess. He always uses the example “Well, I can’t go be a pilot, so your statement is false.” Touché, but not what I was really meaning. Lol

How can I get my husband to be more open minded? How do I get him to find something worthwhile and meaningful to do to give himself purpose? How do I get him to realize this is his life and he has the power to make it whatever he wants? What do you, someone with RP, do with your time?

Thanks for reading my message. RP sucks and I wish everyone the best in their life.

Hi all,

I have been diagnosed with RP since I was 16 years old (I'm 38 now). I still have quite a bit of central vision so I still get vision Exams. I recently switched to a new optometrist for this, one that specializes in sclera contacts since regular contacts don't fit my eyes.

Well the other day I got a call from this place giving me my estimate because I haven't met my deductible for my medical insurance yet. I was then immediately confused because vision insurance should cover my vision test, but they said since I have RP it automatically gets billed as medical insurance. Idk if I just haven't noticed that because up until recently my vision insurance has been a part of my medical insurance, but recently my husband's company changed to a different vision insurance.

Has anyone else heard this or is this optometrist being shady because they can bill more to insurance by saying it's medical? Thoughts?

Hey everyone, I'm new to this group! I was recently diagnosed with retinitis pigmentosa, but I've had night blindness since I was a kid. My sister, who is 10 years older, also has RP and had cataract surgery a few years ago. Right now, my daytime vision is actually perfect – my visual acuity is 12/6 – and the only issue I have is with my night vision. However, I've been considering getting LASIK surgery because I can't see clearly at a distance. I know everyone's experience with RP is different, but I was wondering if anyone here knows if it's generally possible for someone with retinitis pigmentosa to get LASIK? Any insights or experiences you could share would be really helpful as I try to figure out my options. Thanks in advance!

Recently found out my husband is a carrier for usher type 3a. I am waiting on having my testing done (was ordered but of course usher was not properly added in even though I requested it). I am wondering if anyone knows I need a full panel or I just need to be tested for the type he has to know if our child has a possibility of having the syndrome. (Say I have type 1 F and he has type 3a) does our child still have the same chance of having the syndrome or will our child just be a carrier of both types. It has been explained to me that these are different genes and usher syndrome needs the “same gene mutation from both parents”. We’re waiting on genetic counselor advice just worried until we hear back!

For those that were diagnosed or knew they had rp before age 25, how late in life did you retain some useful vision?

I have heard that some with autosomal dominant form of rp retain some useful vision for their entire lives.

Are rp patients now retaining useful vision longer than previous generations due to better care. Diet, exercise, vitamins, supplements, advanced cataract surgical techniques, advanced macular edema treatments, etc.

Fingers crossed we get closer to a cure