My experience with retinitis pigmentosa (RP)(self.Blind)
submitted by Competitive-Equal-95
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.
K41M1K4ZE10 points1y ago
Yeah RP is a bitch. I always find it a bit funny that most people just think you're clumsy, dumb, drunk or a total asshat for the things you mentioned.
I'll get a cane soon, so I hope it gets a bit better in regards to running into people, but I'm already excited about the odd looks when I walk into a train using my cane and then pull out my cellphone to browse some reddit.
Competitive-Equal-95 [OP]1 points1y ago
Yeah, it does get quite demeaning when people see it as just a personality trait when you're suffering from RP. Just wondering, what is your vision? (like 20/40, etc)
K41M1K4ZE2 points1y ago
I don't have the details remembered, but my central vision is pretty good and my field of view is under 10%
r_12353 points1y ago
Hmm,
I have Star gardts, not RP.
Considering my current level of eyesight, I wouldn't remove them and have some robotic solution installed. I just like them too much and feel that robotic solution would be imferior and way too high on maintenance.
If there was a solution which restored my eyes to normal condition or improoved sight without removing them all together, then I would go for it. I just don't want to loose these natural balls, for robotic ones. Lol, Just another thing to charge daily, imagin how would you charge those robotic eyes?
Competitive-Equal-95 [OP]1 points1y ago
Yeah, me neither. The robotic solution has you wear these bulky glasses as well and doesn't restore to original sight. But you don't remove your eyes as they're installed behind the eyes. Search up the Argus II for more info about it. But the cost and state my eyes are in wouldn't make much sense for me to get it.
TechnicalPragmatist1 points1y ago
Totally blind here and I don’t want one I love and am proud of being totally blind.
PaleontologistTrue743 points1y ago
Aye I got the same shit. My folks dont have it either, nor there distant relatives. What's your mutation? Mines impg2
As for cures.. we has a recent break through with chips. Thst one doctor in san fran for example. We might see robotics before full restoration but its coming sooner then expected.
Competitive-Equal-95 [OP]1 points1y ago
tbh I don't know my mutation. My parents hid my condition for a while so I wouldn't be scared. Hopefully, that cure can come man. Next time I go to my ophthalmologist I'll ask for my mutation.
PaleontologistTrue743 points1y ago
Man that sucks to hear. Get back into the system you might pop positive for some field testing. If it's your thing I mean.
Would you have any reservations about getting cyber robot eyes?
There's talks about stem cells coming back into play aswell.
Competitive-Equal-95 [OP]1 points1y ago
I don't think my eyesight is bad enough to get the robot eyes. I see fairly well and can read without glasses. The stem cells though seem like the perfect solution but for now I think I'll just listen to my ophthalmologist.
PaleontologistTrue742 points1y ago
Facts. Grab a trip to a specialist too. Portland and san fran are the hot kids on the RP research. Dr duncan in san fran was my specialist for a long time.
Similar to you. I was diagnosed young ( 14. 23 now ) which is giga rare for us. It's always the late 40s to 50s crowd that get our first signs of blotches.
I cant even imagin how that must have impacted a 4 year old. Those tests where brutal.
kramwam3 points1y ago
I'm curious how those drops make you see better, what do they do to the eyes? I am quite older than you and never was given such medicine.
Davidbrcz7 points1y ago
If you have swellings in your retina, they can reduce them, which can improve your ability to visual acuity.
kramwam1 points1y ago
Thanks! I am happy it works for you.
Davidbrcz1 points1y ago
My doctor tried but it doesn't work for me. My swellings are close to Mt everest and my vision has never been that shitty.
No-Satisfaction78422 points1y ago
Hey there. Around that age is when my vision started getting bad enough that I was having similar issues, tripping over things, running into people and all those things you mentioned. The teenage years are hard enough as it is, there’s a lot of social pressure to fit in, kids can be assholes etc. so I totally feel you. Honestly the best thing I did for myself was start carrying a cane for identification purposes when I was 16. At first I only used it at night because I figured that lessened the chances of anyone I know seeing me with it, but eventually I got comfortable with it and started carrying it all the time. You can get a folding cane so if you just aren’t feeling like using it for whatever reason you can fold it up and put it in a backpack or something. If you stumble into somebody and they see a white cane in your hand you literally don’t need to give them any explanation LOL. They immediately understand. It’s honestly such a relief. I know canes aren’t for everybody, and not everybody is ready in their journey to start using one, so don’t feel bad if that’s you, but keep in mind there are some advantages to it even if you don’t feel you need one for mobility yet
dunktheball2 points1y ago
I remember when I was young them putting stuff on my head. lol.
What's weird is after so many years of my vision being bad I wonder if I'd even want it miraculously fixed. It would probably feel weird to me.
Competitive-Equal-95 [OP]2 points1y ago
Even if it is weird, at least for me it's worth it so I can be more independent not having to rely on people to walk at night, in public places, etc.
No-Satisfaction78421 points1y ago
In my early 40s here and my RP is pretty advanced. Hell yeah I’d let them fix it if they could LOL. I mean, I’m fine as is but having normal or at least more vision would be great, of course
DHamlinMusic1 points1y ago
Oh it's not weird, I've only been blind just shy at 2 years and I think it would probably feel weird for it to suddenly not be the case but take some getting used to, just like getting used to not seeing you took some time.
Competitive-Equal-95 [OP]1 points1y ago
Also have had a funny diagnosis. One doctor told me I had a lazy eye and I needed to wear glasses to correct it.
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