sorry if this is all over the place.
I'm 14 years old and was diagnosed with RP around 4 years ago. I do get nervous sometimes but I think of it as it was what is given to me and I do the best with what I have. My parents don't have RP which is a little odd but fairly normal for this condition. I've done many tests and been to many doctors since I was around 4 to figure out my problems. I to this day have problems bumping into people sometimes, missing handshakes, struggling to see something I dropped, etc. My left eye is near normal vision but my right at one point was so bad it was a blur. My peripheral vision has deteriorated too.
I was prescribed by my ophthalmologist dorzolamide HCL ophthalmic drops. I use them 3x daily. They burn a lot but worth it for what it's done. I can't remember by how much but it improved my vision by a pretty good amount. It also from what I feel made my peripheral vision better.
The process of getting diagnosed was pretty long. I remember that it was at a research hospital and we did tons of tests. They strapped stuff to my head and told me to sleep. I was put in many types of drops. They tested my parents to see if they had the genes and some other stuff I don't remember.
Sometimes I look at trials and hope one day for a cure to come or be a part of one of the trials. But at the end of the day I'm thankful for the eyesight I still have and can properly function with. Lmk if you have any questions.
I am male and have been diagnosed with rp since I was 15/16 and will turn 21 in a few months. The progression in my rp is overall not that bad compared to others. I can see perfectly fine during the day but at night it’s hard for me to drive long distances (20 mins or more) or roads I am not familiar with (I try to avoid driving at night entirely). Honestly I always suffered from really bad vision but this is the first time in my life I can truly grasp that they certain things I just can’t or shouldn’t do and just overall I’m not gonna have a normal life.
My question is somewhat complicated but I think many people can relate to me. It has been hard for me to get into a true relationship but I’m in college and their is a girl I am talking too and we really like each other but she has no idea I have rp and just thinks I’m kinda anti social especially when interacting in the dark. I wanna tell her I have rp but idk how to exactly. I want her to understand what she’s getting into if we do officially get into a relationship but I also don’t wanna overwhelm her either.
Other younger people with rp how did you tell your SO about your condition? Also how does your dynamic of your relationship work, like for me not being able to see normally at night makes a lot of things complicated and I feel like such a hindrance. We’re young so her not wanting to fully commit to my burden makes sense but shittt I’m tired of being alone, I wanna be happy too.
What is perplexing to me is that I never suffered from any night vision loss or any peripheral vision loss I just felt a flickering sensation in my peripherals and went to the doctor then somehow got diagnosed, Im hoping my case isn’t severe. thats it I just wanted to share my experience
I am just 18 year old Male.... I have clear central vision and peripheral.vison is little left . When I put my hands on side,I know what it's going on but it's blur. Does it become completely blur or black ? Does it really cause total blindness? Do we tend to loose our ability to read? I want to be a software Engineer or should I.change my career option ?...will.it affect my reading skills or I wont be able to read anything at all in future ? I have heard trials about Jcell stem cell theraphy(phase 3 trials) which will come out in 5 ro 6 years..is it really going to help people with rp ?
Guys , I'm more of a newbie to reddit so please be kind. This is gonna be more of a personal post. I'm a 20 year old who has been diagnosed with retinitis pigmentosa a couple days back. Since then , I've not been able to stop freaking out. I'd like to think of me as one of those people who are crazy enough to think they can change the world.
This is more like one of the most crucial times of my life because I have my Start-up coming up and I have been putting efforts to achieve my dream of becoming an athlete. Usually , when I've been backed into a corner with some difficult situations like these , I could pull myself up. But this has got me stuck.
I've been putting aside a lot of hurtful memories thinking that I can overcome them later. But now that this happened , all of those traumatic moments came crashing down to my mind and I'm collapsing. This has made it hard for me to think normal. I've had difficulties seeing at night and deep inside , I always felt like there was not gonna be any cure for this. But knowing that I might loose my vision completely has made it worse for me.
Hearing them doctors say "Just Pray to God" scattered me all over the place. I just couldn't pull myself to even believe there is God. Just left me devastated.
They said I must have inherited this from my mother. She has 5 siblings out of which three are affected by this (including my mom). The other two people are completely blind now while my mom is able to see well in the night times. Infact , she's been driving for like 16 years now. I don't know how I inherited this from her but it seems like I might end up blind too just like the other two siblings she has.
I don't know why I made this post but if you can say something good , please do. Might go a long way in making me get back on my feet. Thanks in advance.
Hey guys, I started a Discord for people with RP to chat about RP stuff. Feel free to come say hi
https://discord.gg/sywz4kWt
Anyone familiar disease? Eye disease in which the back wall of the eye (retina) is damaged. Basically you see in tunnel vision.
My FIL retired (65old) has it and it’s getting tunnel vision is getting worst, he’s been an outdoorsy and active person hike, biking and fishing. He can do any of the activities except for fishing but its still very hard for him since the condition getting worst.
I don’t own a oculus but interested in getting him one for Christmas. He’s not a tech guy at all. But I’d like for him to try.
Is there a setting on the Oculus that help? Maybe magnify? Any feedback or suggestions are welcomed?
Hey guys I posted a link to a discord I made last month for folks with RP but the link expired because I’m a discord noob. Some folks have asked me for the link so I figured I’d just make a new post with what should be a permanent invite to the server. We have a relatively big group already and it’s a great place for fun banter and to share news and advice about all things RP.
https://discord.gg/GVb2vB8UJ5
Howdy y’all. There seemed to be some interest in a Discord server for the lurkers here in RP world so I set one up. Feel free to join to chat and meme about all things RP.
Edit: new link
https://discord.gg/sywz4kWt
Edit: someone mentioned r/lowvision so consider joining if you fit the bill!
I was just wondering if anyone else had similar symptoms to see if they're connected to RP (its a few months until I see my ophthalmologist). Tried to post this to r/RetinitisPigmentosa but ive gotta get approved and its also a very small sub (join if you have RP!!) so sorry if thisnt exactly the place
They are:
Visual Snow
Sensitivity to light
in dark rooms I get the sort of visuals you get when you close your eyes until my eyes adjust and then the visual snow is a little worse
I also have severe astigmatism and strabismus and near sightedness if that matters.
Essentially, I've just been diagnosed with RP a couple days ago and just had a genetic exam done to confirm things. I'm wondering if wearing sunglasses will slow down RP or will regular anti-glare coating on my prescription glasses be enough? Or does any of this even make a difference at all?
And she doesn't let blindness stop her from shooting a gun. How else does the Gooch inspire you?
How do you prepare a kid for something like this? He's a smart, confident boy with a real future in music. I'm sure he will do great things. But as a parent, is there anything you can do to ready him emotionally?
Last year my boyfriend (25) got diagnosed with Retinitis Pigmentosa. The mutation he has is called RP2, it is X-linked.
He has been very depressed since. All his dreams are falling apart. He loves cars and loves to drive. He quit his job (as a mechanic) to start on process mechanics, but even though he got an internship at the best place, they don't want to hire him once he completes his internship, because of his bad eye sight.
He does not want to go to the hospital for further testing, because they will take his driving license away. I am worried about him - he is still in denial and wants to forget his diagnosis, so he can continue living a normal life.
His parents are not understanding or comforting. They don't even really know what is going on. I am a biologist so I understand what is happening to him. And because of that, he broke up with me a few days ago. I am a constant reminder that he is facing handicap. He is very self destructive and I am at a loss. I was prepared to help him through this and have start a family. I don't know whether I should get over this break up and move on or if I should fight for him. He told me he does not want to live if he becomes blind.
I don't know how long time he has left with his vision. Is there a way to find out? Can anyone with RP, who lost their dreams after the diagnosis, tell me how the coped? Everything I say pisses him off because "I don't understand it". Is there anything I can say or do to show my support?
[Update 6.21 - This Study has been filled and we are no longer accepting applicants. Thank you.]
Hello, hope this is ok to post here. We started a Discord server for people with RP to meet and chat about our condition and experiences. Feel free to join and say hi!
https://discord.gg/sywz4kWt
Hey guys I posted a link to a discord I made last month for folks with RP but the link expired because I’m a discord noob. Some folks have asked me for the link so I figured I’d just make a new post with what should be a permanent invite to the server. We have a relatively big group already and it’s a great place for fun banter and to share news and advice about all things RP.
https://discord.gg/GVb2vB8UJ5
