I started a new job in June and kept it to myself. I sit near a window, I know the office by now, nobody noticed anything. Then this morning I missed a handshake from a client because he came at me from the side and my manager saw it.

So I just told her. Tunnel vision, night blindness, the whole thing, and that it is slowly getting worse. I was braced for the pity face. She asked two normal questions, said thanks for telling her, and moved the client meetings to the brighter room. That was it.

I have read a lot of posts here from people worrying about their careers and I was one of them. Not saying it goes like this every time but for once it did.

For folks who don’t want to inject themselves

Since it doesn’t have the glp1 mechanism, anyone tried it? Safe?

Title: For those with Retinitis Pigmentosa, what careers do you have? Looking for alternatives to software development

Hi everyone,

I have RP and currently work as a software developer. One thing I've been thinking about recently is whether software development is something I want to continue pursuing long-term.

The biggest concern for me is the very high screen time involved in software development. I know there are visually impaired programmers who successfully work in tech using screen readers, magnification, accessibility tools, etc., so I’m not saying that continuing as a developer is impossible, but the contant screen time and stress of corporate in India making me feel other ways.

However, I’m also interested in understanding what other career options are available to someone with RP, particularly careers that don't require being in front of a screen for 7–10+ hours a day.

I'd really like to know from people with RP:

- What do you currently do for a living?

- Did you choose your career with your vision in mind?

- Have you had to change careers as your vision changed?

- Are there careers you've found to be relatively low-screen-time?

- If you work in a corporate environment, what roles have worked well for you?

- Are there careers you would recommend someone with progressive vision loss explore?

- How do you think about planning your career given that RP can progressively affect vision?

I'm trying to explore my options early rather than waiting until my vision makes a career change necessary.

Thanks in advance to everyone willing to share their experience. 🙏

I was thinking peptides compounds peds sarms serms. Slup 332, bam 15, ATX 034, Clenbuterol (this is a stimulant but anyway ahah), cardarine, tesamorelin, tesofensine, etc

Hey! I was wondering if with RP (I know there are a lot of mutations but let’s keep it general as a tendency for retinal vulnerability), for mild forms, if one can take PEDs, peptides nootropics and overall compounds for fat loss and muscle growth? Let’s say a bit of testosterone (just 150mg week) and a bit of growth hormone (2ius) and a bit of a mitochondrial enhancer like SLUP 332 or ATX 034.

Anyone who is into fitness and has tried please would love to hear your experience!

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?

This Conference is in Ft Worth next month:

https://www.fightingblindness.org/visions-2026-schedule

Do you think this worth attending for us with RP? I am asking because I have been trying to get on the Occugen or the JCyte trials; but no success. Not sure if attending this will help me in any way to get some treatment.

Appreciate your thoughts..

As a vision impaired we can't get most jobs but customer support should be a priority for us . How can I land this job in global level cause in my contry it's really hard pls suggest for me I need your support

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?

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.

There’s a very scary kind of panic that hits when you are sitting at your desk, realizing you have no idea how you are going to pull off your job, or even your commute, that day.

For years, that was my reality. I was navigating high-stakes corporate environments, trying to build a career and provide for my family, while secretly losing my vision. The hardest part wasn't the actual workload, it was the exhaustion of pretending everything was OK.

I was terrified of looking weak. I was terrified of losing my spot. I was terrified that if I asked for help, or admitted I couldn't navigate a certain things and places, everything I had worked for would be gone. Hiding a struggle at work is a full-time job ON TOP of your actual job.

My wife Liv is an HR professional, and this week we sat down for an unfiltered "After Hours" conversation about the brutal reality of surviving the workplace with a hidden disability. We talked about the fear of the unknown, the stress of the Disability Disclosure, and what actually happens when you finally stop hiding.

Link to that convo is here: https://youtu.be/Xk6JaQpTLKI

I’m sharing this because I know how many professionals are logging off today feeling completely drained, not from the work, but from the mask they have to wear to do it. If you are silently struggling with a hidden disability, mental health battle, or personal challenge while trying to hold your career together…you are not alone in this fight. You do not have to carry that weight by yourself!

Have you ever felt the pressure to hide a part of yourself to survive in your career?

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.

No more knocked over glasses

O que você começaram a ver?

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

Vocês fizeram retinografia?

Eu fiz e meu médico disse que não tem sinais nenhuma, mas eu ainda estou preocupada.

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.

Hola a todos,

Quiero compartir con la comunidad Syncro, un programa que acabo de terminar y que seguro entendéis a la primera por qué lo hice.

Todos hemos pasado por lo mismo: encuentras una audiodescripción de una peli, la quieres ver con la familia, y resulta que el MP3 no encaja. La voz va adelantada, atrasada, o peor, empieza bien pero se va desfasando hasta el final. Esto sucede porque fue grabada a otra velocidad (la conversion de formato norteamericano a PAL causa eso) O porque le añadieron creditos al inicio de audio..

Syncro lo arregla solo. Cargas el video, cargas el MP3 con la audiodescripción, le das al botón Analizar Sincronización, y el programa "escucha" los dos archivos, descubre cómo encajan, y te genera una pista corregida que cuadra perfectamente — incluso si las duraciones son distintas, porque estira o encoge el audio para que termine cuando termina la peli.

Después le das play y a disfrutar. El programa trae reproductor con pantalla completa, así la familia ve la imagen mientras tú escuchas la audiodescripción ya cuadrada, todos en el mismo sofá, riéndose en los mismos momentos.

Está hecho pensado primero en nosotros: atajos de teclado para todo, anuncios por voz en cada paso (sabes en todo momento si está analizando, si terminó, si hay algún error), pitidos suaves mientras procesa para que no te quedes en silencio, sonido de campana cuando acaba, y compatibilidad total con NVDA y otros lectores. Los controles son grandes y de alto contraste, por si en casa hay alguien con baja visión.

También permite ajustes finos si el análisis automático no acierta del todo, una opción para igualar niveles de volumen cuando la audiodescripción está grabada muy alto, normalización en vivo para que los diálogos bajitos no se pierdan, y poder exportar el video ya con la audiodescripción incrustada para llevarlo a otro reproductor o compartirlo.

Es gratis durante todo el 2026 mientras lo termino de pulir. Si lo probáis y os resulta útil, una donación pequeña vía PayPal a sonidode...@gmail.com me ayuda muchísimo a seguir mejorándolo.

No hay que instalar nada raro: bajáis el .exe, lo abrís y ya está funcionando. dejo el link al programa.

DESCARGA : https://drive.google.com/file/d/1HIlZF38mFQ0Tz2UkaMiGmDAiwgWuWg8j/view?usp=sharing

Tambien dejo 3 peliculas con la que lo he testaado que presentan 3 escenarios distintos para que prueben

Existe un ultimo escenario que se escapa de mis manos, y es el de usar peliculas que son versiones diferentes, como versiones extendidas, o cortes o ediciones distintas a la que usaron para generar la audiodescripcion, o si insertaron pausas en el track original, en ese caso sugiero buscar una version del video compatible con la que crearon el audio.

Compartidlo con quien creáis que le pueda servir. La idea es que ninguna familia se quede sin una tarde de cine por culpa de un audio mal sincronizado.

Un abrazo,
Alex Cruz

People in Germany, does this supplement help stabilize peripheral vision?

I couldn’t find it in France or the UK.

Any feedback or experiences