r/RetinitisPigmentosa

I am a young man living with Retinitis Pigmentosa (RP). I noticed some hearing issues and immediately suspected it might be Usher Syndrome. However, the strange part is that all my audiological tests came back excellent. I spent two years certain that there was a problem—I could feel it—but the tests kept contradicting my intuition. ​After extensive research, I discovered that I have ADHD. This neurological disorder can affect how the brain processes sound. Here are some of the symptoms I experience: ​Auditory Distraction: I hear the sound, but I cannot understand what is being said without extraordinary mental effort, especially in noisy environments. ​Speech Perception: When you speak, you don't hear yourself clearly, and if you speak too fast, your words might come out garbled or unintelligible. ​Repetition: Constantly asking people to repeat what they just said. ​Nighttime Clarity: Noticing that you hear better late at night because background noise disappears, allowing the brain to focus without distraction. ​Does anyone else struggle with this combination of RP and ADHD symptoms?"" aren't about your ears. ​I am a young man living with Retinitis Pigmentosa (RP). For two years, I struggled with hearing issues and feared it was Usher Syndrome. However, my audiological tests were consistently perfect. ​After further research, I discovered I have ADHD, which explained everything through Auditory Processing Disorder (APD). My symptoms include: ​Auditory Distraction: I can hear sounds clearly, but I struggle to process speech in noisy environments. ​Speech Monitoring: I find it hard to modulate my own voice, and my speech can become fast or garbled. ​Need for Repetition: Frequently asking others to repeat themselves because my brain hasn't 'translated' the sound yet. ​Nighttime Clarity: Hearing feels 'better' at night simply because there is less sensory input to distract my brain. ​Does anyone else with RP experience this overlap of ADHD sensory processing issues? I’d love to hear your stories.

I am a young man living with Retinitis Pigmentosa (RP). I noticed some hearing issues and immediately suspected it might be Usher Syndrome. However, the strange part is that all my audiological tests came back excellent. I spent two years certain that there was a problem—I could feel it—but the tests kept contradicting my intuition. ​After extensive research, I discovered that I have ADHD. This neurological disorder can affect how the brain processes sound. Here are some of the symptoms I experience: ​Auditory Distraction: I hear the sound, but I cannot understand what is being said without extraordinary mental effort, especially in noisy environments. ​Speech Perception: When you speak, you don't hear yourself clearly, and if you speak too fast, your words might come out garbled or unintelligible. ​Repetition: Constantly asking people to repeat what they just said. ​Nighttime Clarity: Noticing that you hear better late at night because background noise disappears, allowing the brain to focus without distraction. ​Does anyone else struggle with this combination of RP and ADHD symptoms"

Hello everyone,

I have RP11 (PRPF31 mutation). I have had night blindness from childhood and it has gotten worse over time. I was diagnosed in 2018 and have been trying to do whatever I can to save my vision for as long as possible. I have been researching many things for a while and following these habits in hope to delay the progression and I have been thinking about sharing it here so it can help people.

Let me emphasize that this isn't medical opinion and solely based on my research and understanding.

RP causes death of retina cells due to many reasons, one of the reason is oxidative stress (ROS to be specific) and it's the only one that we can do anything for. I have been taking few supplements and following few habits for managing this.

Supplements:

1. NAC + Glycine - I'm sure by now everyone knows that NAC is one of the proposed ways to reduce oxidative stress. But from what I've read, glycine is an important addition that is required to produce "Glutathione" (retina’s major endogenous antioxidant)

2. Omega 3 - Provides structural support for photoreceptors and reduces ROS

3. Astaxanthin - powerful naturally occurring antioxidant and has direct effect on reducing ROS.

4. Lutein, Zeaxanthin - both works in reducing oxidative stress. I take Swisse Eye health +, it has these.

My routine:

Post lunch: Swisse eye health +, Omega 3

Post dinner: NAC + glycine, Astaxanthin.

Exercises:

Zone 2 training: As many of you may know, mitochondria are the primary consumers of oxygen inside cells. Retinal photoreceptors are among the most metabolically active cells in the body, so mitochondrial function becomes important. From what I understand, improving mitochondrial efficiency through aerobic exercise may help reduce oxidative stress over the long term.

Zone 2 training helps increase both the density as well as efficiency of mitochondria. Long term training should have a net positive effect on reducing ROS.

What is Zone 2?

It just means exercising in a particular heart beat range. You can look it up for details, generally formula is this

Max heart rate = 220 - your age

Zone 2 = 60-70% of your max heart rate.

I target 180-200 min / week zone 2 training. This varies for everyone as per their fitness and age.

Daily Habits:

1. Sunglasses whenever outside: I think this is something everyone must know about already that UV light causes damage to retina so a good sunglass will surely help.

2. Blu ray filter glasses: If you wear glasses and spend time using screen, it's better to use blu ray filter glasses which reflect the harmful blue rays coming from screen. Using dark mode and eye protect features will also help.

3. Good sleep, no smoking/ alcohol.

These are few things I follow everyday that I wanted to share here in case it helps anyone.

Important note: please note that this won't stop the progression, it may not delay progression by a lot even but even saving vision for few extra months/years is important.

If you're unsure about anything here, consult your doctor before following anything blindly.

I recently did my PSC cataracts surgery in my right eye (non dominant eye) a week ago and I just hate it. My vision feels imbalanced and worst of all is that I might need reading glasses once my second surgery is completed. For context I didn’t require reading glasses prior to surgery and my near-intermediate vision was okay prior to the surgery. I don’t know if this imbalance feeling would get better, I don’t know what the future would look like. I am scared and worried. Anyone in the same boat who have had the surgery and could share their experience?

Hi, IM Ramesh, 30, I have low vision due to rod cone dystrophy. I'm looking to connect with girls who also have low vision or who understand these challenges, mainly for friendship and genuine conversations.

​My previous relationship ended because of my condition, and sometimes I feel lonely. But I still believe good people and meaningful connections exist. I'm a caring, honest, and supportive person who enjoys deep conversations, movies, and sharing life experiences.

​If you're looking for a real friend with a kind heart, feel free to DM me.

hi im 18yo and was diagnosed with rp at around 12-13 during covid. ive had mental health struggles before my diagnosis, but as i get older eyesight has become a really touchy subject.

ive been through multiple medications and right now im at a point where i just dont want to take anything and honestly havent been taking meds for like 2 yrs. i know its bad, i dont know why i have such an insane aversion to meds. i think it might be bc one of my past meds put me in crippling pain and like a year ago i nearly choked taking a painkiller for a headache so now i get really anxious when i take pills. my experience w meds for my rp is just bad overall, anything doctors give me is painful or i develop a taste aversion to it. i just feel so stupid and selfish for not taking my meds lol. its like i have the materials to stop a burning ship but dont use them for a reason i cant even figure out

idk, overall i think im just struggling to even accept my rp. the thought of going blind is so terrifying. i feel like im a frog in boiling water that doesnt realize its being cooked until its too late. my dad said a week ago that there will come a time where ill have to give up driving and that thought makes me so sick. it feels like death because what is the difference really? ur world goes dark and everyone uve ever loved fades away and becomes just a memory. theres a chance my vision will never get to that point but the thought of it even being a possibility and the uncertainty of it is what makes it even more scary. im scared.

how did you guys accept this part of rp? or is it like this forever? i feel like i should start seeing a therapist but im going off to uni soon so i feel like its too late for that. plus im too scared to talk abt this w my family or friends, i dont want them to know about this

any advice is appreciated 😢

I’m based in Paris and I was recently diagnosed with RP. I would like to know your recommendations regarding vitamins/supplements to take, based on your experience and how stable the disease is

- Omega 3 ? Which type ?

- Lutein ? Which type ?

- NAC? If yes, which type?

- Multivitamins

My ophthalmologist told me to take Vitamin A 50,000 IU, but I read that it might not be good/safe. Can anyone confirm?

Today I'm still suffering the 'hangover' from it. I couldn't even open my eyes. My wife was ready to take me to the hospital but a cocktail of Tylenol headache, Advil and Gravol gave me relief after a few hours.

I've never experienced pain like that in my life, and I'm a 53 year old man who's done a lot of stupid shit over the decades.

Today, my entire head feels achy, live an overworked muscle. My neck is stiff and my eyes are super sensitive too.

Hopefully it's over with as I can't even call my ophthalmologist until Monday.

What sports are you guys playing? Back in the day I loved playing badminton and volleyball but I can't play them anymore because my reaction time has slowed down. Currently, my central vision is still at 80% but my peripheral vision is quite blurry

Any mothers? Or egg freezing ladies in da house?

I had a talk to a doctor who confirmed that hormonas changes and prob the baby’s feeding through her mum can have an impact on vision on people with RP.

Anyone who went through a pregnancy or egg freezing treatment that could share their experience?

Thanks-

Hello i am Ramesh from india

was diagnosed with Rod Cone Dystrophy in 2019. I went to the hospital, and they told me to come for checkups once every 18 months. In 2020, they suggested an ERG test. But I’m scared to do it. I keep thinking, “What if the test tells me that I’m going to become completely blind?” That fear is stopping me.

When people see me, I look like a completely normal person. But I have already lost around 50% of my vision. Right now, I’m still managing somehow. I go out alone and do most things by myself. When I walk on the road with friends, I walk beside them, but I often can’t recognize their faces properly. Because of that, I sometimes walk ahead without reacting to them. Then they get angry and think I’m acting arrogant or ignoring them on purpose.

Sometimes I feel like going somewhere far away where nobody knows me. Honestly, sometimes I feel like instead of slowly losing my eyesight little by little, it would be better if it just disappeared completely at once.

I never got my full license but was learning to drive when I was told to stop and that it would be illegal for me to drive by my ophthalmologist. I have a lot of usable vision and function completely normally so far (minus driving), so whenever I talk about how I can’t drive to go pick things up or do things that require a car, he says “you can just drive and you don’t need all these people telling you what to do”. It’s incredibly frustrating and I’m so sick and tired of it. He’s been extremely supportive in all other aspects but he’s a big “f the establishment” type guy and believes that they took my license away wrongfully. He says things like “it’s at your own risk” but really it’s at the risk of everyone around me if I can’t see them. It’s SO frustrating to continue to have this conversation and explain to him that NO I can not drive. For one, I don’t even have a license. For two, it’s DANGEROUS. For three, why does he think his opinion trumps that of the world renowned ophthalmologist who is trying to KEEP ME SAFE? I’m going nuts.

11 year old.. we noticed some mild night vision issue for several years but otherwise he seems to be totally fine. I did some research and suspect rp, finally saw ophthalmologist and got the scans… We sought 2nd opinions with the reports and got similar conclusions. My dad is the only one that had some vision issues. He’s in his 70s, mild tunnel vision that started probably in his 50s, no night vision problem and can live his normal life, even driving in the evening. I’ve been very depressed since the diagnosis. Among all the possible genetic problems, this is the last thing that I would have expected. We have scheduled erg, Goldman and genetic tests. The doctor looked at me as if he would be blind by adulthood… sorry it’s just rant

I am a white, handsome, muscular guy. I have been doing calisthenics and weightlifting at the gym for years. I am in great physical shape. But I have retinitis pigmentosa and other conditions and I am losing my vision rapidly. I can barely see anymore.

I live in Algeria, North Africa. There is zero support here for people with our condition. The government assistance I will receive is equivalent to $40 a month. That does not cover food let alone rent.

I have a master's degree in financial institutions and I studied law. Nobody will hire me. They assume I am not capable because of my vision. I have been facing discrimination and humiliation from everyone around me including my own family. I have been broken down for so long that I have gone cold.

I have tried to get medical care abroad. France requires a genetic test that simply does not exist in Algeria. So I am completely stuck.

I am at the brink of suicide. I do not know what else to do. The only way out I can see is marriage — moving to a country where there is real medical care, real support, real opportunities. Countries where people with disabilities are actually treated like human beings.

Is anyone else with RP feeling this kind of breakdown? Does anyone else feel completely cornered with no way out?

Hi everyone,

I’m a Cost Engineer and Commercial Contract Manager working in China. My entire career is built on mountains of PDF contracts, drafting documents in Word, and heavy Excel use.

Last year, when I turned 39, my eyes started waving a white flag. I found that staring at traditional "white background, black text" screens for long periods became physically uncomfortable. The biggest nightmare for me right now is dealing with financial data in Excel. When I see a string of zeros (like 000,000), the glare makes them bleed together. I literally have to pause, squint, and intensely focus just to count the zeros to figure out the exact amount.

With some advice from AI tools, I tweaked my PC settings to force dark modes wherever possible. But as we all know, the reality is frustrating—many older PDF readers, specific work software, and certain websites just don't render a true dark background with white text properly. The sudden flash of a white screen is agonizing.

During my search for better setups, I stumbled across two alternative tech solutions that sparked an idea:

Programming Monitors (Specifically the BenQ RD Series): These are designed for software developers, but their core features—extreme contrast optimization for coding, true matte "Fine-Coated" anti-glare panels, and physical hotkeys to instantly switch contrast modes—perfectly address the contrast sensitivity loss and severe photophobia many of us with RP experience.

E-ink Displays: I already use a Kindle heavily for travel on flights and trains. I've noticed that reading flowable formats like ePubs (where I can infinitely scale up the text, rather than struggling with fixed, image-like PDFs) on an e-ink screen is a massive relief for my eyes since there is no direct backlight.

Here is my thought: Tech companies don't necessarily need to spend millions developing "niche" medical-grade accessibility monitors. By simply taking these existing premium IT/programming monitors and adding a bit more optimization (like a dedicated "Low Vision Mode" in the firmware), they could create an incredible tool for our community without the cost pressure of a standalone product line. It’s a perfect example of inclusive design—what saves a programmer's eyes from fatigue could literally save an RP patient's career.

I wanted to reach out to the RP community here, especially those working in the US/Europe:

Have you ever faced the deep anxiety that RP might force an early end to your professional career?

Outside of legal accommodations (like ADA), what are your real-world survival strategies? Are there specific monitor models, software setups, or workflows you use to keep functioning in a highly text/number-driven job?

Looking forward to hearing your stories and advice!

Has anyone followed this one?

https://clinicaltrials.gov/study/NCT06891885?cond=Retinitis%20Pigmentosa&term=%20DSP-3077&viewType=Card&rank=1

The clinical trial has just kicked off, but I looked into that and it seems promising. Apparently they tested it on 2 individuals in Japan and it met their criteria for safety and cell survival (https://pubmed.ncbi.nlm.nih.gov/38065067/)

Maybe this can give hope to all of us, especially those with late-stage RP.

Hey there

Looking to connect with people with the same gene mutation. We know the type of mutation might change between everybody the the gen remains the same.

Having kids knowing it’s a 50/50?

How fast is progressing?

Any clinical trials?