r/RetinitisPigmentosa

Hey all, I hope you all are well, I have RP, I got diagnosed when I was about 16, now 29. Was wondering if anyone plays any console games?

Hi, My name is stephanie, I am 16 turning 17 this year. I was diagnosed with RP when I was 5 or younger, I can't remember which type i have. I can go months without thinking about the future and my eyesight, until it comes and reminds me. Its degenerative, is it 100% certain that I will go blind? How fast will this happen? Will I still be able to do the things I love?

^(Honestly, what I hate most about this disease is that as I adapt and adapt to my situation, the condition deteriorates again, this thing has destroyed me.)

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"

Hi I want to create a group for all of those who have been identify with this gene mutation!

That way we can share our experiences and somehow keep track of how this progresses.

Every single mutation works differently, and is by us sharing our experiences that the data gets updated in real time.

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.

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?

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.

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.

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.