Category: Safe Haven
Hi All, So, all of you blindies on the zone can answer this one, so I'm hoping this will make a good discusion evolve. What is your condition, and exactly how blind are you? As for me, I have Lebers Amaurosis, and have been blind since birth. I am considered totally blind, though I have light perception, and can see some shadows. By shadows, I just mean that any object that is the right distance away, and at the right angle, appears as a blotch of extra darkness against the normal light. Kinda hard to explain. But yeah. Basically I couldn't tell a person from a pole, everything is jsut a blob. Not even a blob. A shapeless mass of darkness. Lol. Caitlin
mine is kinda confusing. I have petersanomally in one eye, which means that I have no cornia in my eye. I also have microcorniathelmia. This is that i have a small eye. I am totally blind, but when I Was a baby, I had 4 different cornia transplants but they didn't work. It was believed that the last one did work, but I had gotten sick afterward, which affected the healing process. I lost what little light perseption in the one eye I had is now gone, due to the deterioration of it. Mom told me that Iwas born with a blue cornia, and so it didn't work when they fixed it. By the last transplant, my eye was deteriorated, so there would be no way for me to see.
I have an undiagnosed genetic disorder which affected my retinas they barely formed and what did grow was so malformed that I have never seen a thing, also my corneas failed to form and the iris in both eyes is barely attached to the lens the whole disc a brilliant blue and they roam constantly.The right eye was removed some time ago due to intractable glaucoma and replaced by the new Bio Eye which also moves around just as the real 1 used to.
I have retinitis pigmentosa. I'm slowly going blind. I can see some, but not alot.
I have lebers too! I have congenital amerosis.
Troy
right, here goes! I have, and wait for this, this is not one to try and say after a few beers! Retinopathy of prematurity, formerly Retinalentral phibroplasia, or more simply ROP or RLF. It's a condition caused by recieving too much oxygen in the blood soon after birth, and is a totally human induced condition. It comes from poor monitoring of the oxygen levels in the blood. too much oxygen in the blood can damage the eyes. that's the short of it, the long is too dam long to tell.
Well Dobyn, that doesn't sound like a name to even try to say even if you're sober, which I always am, haha. Anyway, the name of my condition is so long, nobody could pronounce it, not even the doctors, it's about 24 letters long, but it's basically optic nerve damage. There is a jelly that's suppose to harden after 2 weeks, so the baby can see, but mine just didn't get hard, and I think it's probably still as soft as it was when I was born. My condition is more simple, because I don't see anything, neither light nor shadows, just nothing. At least I can't ever have spots in front of my eyes, like I've heard some people have sometimes. They'd say that, and I'd think, eu, I'd rather be totally blind than see spots that aren't really there.
wonderwoman
Hehehe yeah, that spot thing, as well as having eye strain and so on, is something us blindies'll never had. As for lebers, I dunno if mine is congenital. Mine is because my parents both had the genes for the condition, and when they had me they were both dominant. But my sis is sighted. So is that the congenital type? Caitlin
My retinas are detached and have been since birth. I was born premature, but as far as I know I don't have Rop. I'm totally blind.
I have RLF or ROP, but I was able to see in my right eye )with help from magnifiers and telescopes and all that.) I was able to see like that 'til about age 9 or 10, but now am 22 and don't see anything (although I wouldn't call it completely dark or anything either.) When my vision was going, I had some light perception, but all through the time I could see anything, the light (especially the sun) really hurt my eyes. I also had surgeries to try to fix my eyes and learned that I also had cataracts in my left eye, but nothing they did really helped at all I don't think. But now I wouldn't wish my sight back anyways, just for reading because getting just what ever you feel like reading in Braille would be so expensive and time-consuming. And I love reading! *smiles*
Leilani
Yeah, if i could, I don't know if I'd want my sight back. But right now there's no way for my condition. What do you all think about that?
I mean, if you could get it, would you want your sight back?
Caitlin
SOrry ot keep posting, I keep forgetting to say stuff. For me, it would depend on what the risks were, teh cost, the amount of sight I would get, etc. And, if I was willling to just changem y life like that, from blind to sighted. I mean, I'd have to learn print, and I might lose my braille ability, and my other talents, you never know. My interests could totally change. And what would it be like to see on day, just out of the blue? I've heard when blindies get their sight back, it's liek an on-off switch; when you want it, you think about it, and you see, but it's not there all the time, because you're used to not having or needing it. Strange. I'm glad i was born blind. It's all I know. I don't miss or want or think about sight at all, really, unless it's brought up, like this. Like I don't wake up every day and think "I'm Blind," and I bet lots of you don't either. But those of you who lost your sight probably do. I don't know ...
Caitlin
Woo here we go, I have microphthalmia, it's a rare condition meaning small eyes. My dad said that when I was little, I did have light perseption but as my condition got worse, I became totally blind and till this day I still am. I also have a history of conjunctivitis, which I haven't had in a long long time. I wear a glass prosthetic in the left eye and a shell in the right. Man I hate my eyes, because when they discharge, it leaves a crusty film underneath my left eye. Kind of embarrassing if someone other than a doctor is looking. Like my medical language? Lol as you can tell I'm a medical freak so I try to use as many doctor words as I can. Can't help it, it's a habbit.
Hia, Well, I have RLF or ROP depending on what you want to call it. I have light perception in my right eye which has been fading gradually over the fact ten or eleven years or so. This is due to the fact that I have a catteract growing in my right eye which the doctors refuse to touch until I can see nothing at all. The reason they won't do anything is, apparently my Retiner is at the side of my right eye rather than the back, so they don't want to opperate on my catteract and risk dislodging my retiner. The way they see it, if I'm totally blind when they opperate, I can't loose anything. I also have developed a condition with my cornea in the past five and a half years. I don't remember what it's called, but it's basically where your corneas dry out and crack and blister. Nothing can be done and it's extremely painful but seems to have eased slightly. My doctor said that, usually, people with my eye problems don't usually devolope the cornea problems until they are much older, say sixty plus. He also said that another condition that I could develope at around that age is glocoma. Seeing as I have the cornea problem early, I have to keep getting tested for that now as well.
ok, I don't fully understand this, but i think i do...I can't spell this so bla. But if you have jaws you'll understand it, it's anopthelmea. and i have no idea what it means he. I'm not good at that stuff. but my parents are both blind, and I only have two sighties in my family.
OK well when I was six months my babysitter decided to shake me quite violently so I internally bled all over the place it screwed my optic nerve and detatched that ret thing... good thing it didn't damage anything else. jifoiewjfioewjioifoesaoioijfds I mean come one with the leat coeijro I love everyone ever int eowrodld iowjifoijoi!!!1!!1!111!!!oij jfewjiofoije
um, sorry? what happened at the end of your last post?
um, sorry? what happened at the end of your last post?
Nothing happened, what are you talking about? I just was saying how greatful I was that nothing else was damaged.
James
3 months premature, to much cocaine from my mother, ROP.
I have light perseption, as well as some shadow perseption, bout it though.
Retinoblastoma. It's an early childhood cancer. usually presents in kids under the age of 5, although I've heard of 1 7 year old boy who was diagnosed with it in one eye. my case was bilateral, so in both eyes. I lost my site completely when I was 2 and a half.
My condition is called CMV retinitis. When my mom was pregnant with me, she contracted CMV, and it was transferred to me, and it dammaged my retina to the point that I have always been totally blind, with no light perception to speak of. As for the discussion that never got going about getting my sight back, I don't know if I would. I am perfectly happy the way I am, and there would also be a steep learning curve, and I don't know if I would really want to make that change. But I don't know. Since there's currently no cure, I don't have to make that decision yet, but if one was ever discovered, I would have to think long and hard about whether to have the cure or not.
Hey I have ROP. I can see some color, light, and some shadows
Hey, I also have ROP which btw is not always caused by human error soemtimes the eyes just don't develop due to the prematurity. I have no sight no light no dark nothing. Would I want my sight back? Its easy to say yes. Yes, if I could see i could participate in speed events on horses, would have an easier time socially, could reead what i want when I want. But it would be a huge life change. Completely overwhelming i'm sure, and I'm not realsure if I'd learn to addjust to it. Its very unlikely to happen though.
well, i am legally and totally blind, lol, but well, I lost my sight three months after I was born, its a long story but well I can see shadows as well, that is, objects surounding or near me.
I’m near sighted. I can see mostly everything except the black board, the stop light, objects that are far away from me, and the most important peoples facial expression and I can only see with my right eye. My left eye is dead. Nothing at all even black or white
I have bilateral alnopthalmia, and have plastic eyes so can't see anything. lol.
hmmm, well i lost my site five years ago. I had a blood clot on my brain, cutting off the oxygen to my optic nerve. I lost my site in like um a weaks time. They say my eyes are great just my optic nerves that don't work. smile- angel
that good old favorit glaucoma. I can see a little but just light and some color. I used to see better. but ah well! It's slowly but surely going away!
I've also got ROP, and I lost my sight when I was about three or four months old. I was born three months earlly, and I don't see anything at all.
I have total blindness due to Congenital Rubella Syndrome.
congential glaucoma and cataracts.
greetings all james here was born premature the oxygen thing rlf or rop blindsince birthand know if even givin a chance wouldn't want my sight back quite happy
I too have ROP. I have limited vision seeing everything close up and far away but lacking detail, in my left eye, and i have some light perception in my right.
I also have lebers. and no, I wouldn't want sight if I could have it. I like liking everyone for who they are, not what they look like. I have minor light perception, but it isn't very useful.
Hello all Nita here or better known has angel29 my eye conditions are my left eye I have gluacoma and no vision at all I was born that way and also my retina never fully grew and my right eye I am near sighted I also have astigmatism that is where the eye jerks around a lot uncontrollabley. I do where glasses to help me see.
Have a good day.
Hi.
I am totally blind. I can't see lite or anything else. When i was a child i think that when people used to take photographs of me i think i could see the flash but maybe it was my imagination.
I was born early and had too much oxigen.
Nikos
I have an opticus atrophy which means the nerves in my eyes don't work, they just didn't grow and connect propperly when I was born. People think it was because of the nuclear accident in Chernobyl 1986.
i have a coloboma, which is like a hole in the iris
i am just on the edge of legally blind so i can see a bit.. just cant see blackboard and stuff like that and cant drive. my contact lenses help alot
well, all the medical terms looks familiar for me. i have peters abnormally, which simply mean that born with a premature eyes, having a small eyes than usual, mainly having problems with cornia. i've did several time of cornia transplants. it seems like quite successfull, but just for the very early few months after the surgery, and things will take place few months later after the cornia transplant surgery. deal to the moutiple surgeries i have for my eyes, either the major surgery like cornia transplant, or the miner surgery like patching for the cornia, i'm getting glaucoma from time to time. i was born with totally blind, but now i can see from time to time and of course the help of moutiple surgeries. i've sight, enough for me to move around, but not for doing stuff like reading or things like that. i can see quite a bit for my right eye, and my left eye just have light perception. happy with the sight that i have now, don't wish to lost it even though i know thats the wrisk there.
I have optic nerve hypoplasia (I think thats how it is spelt). Basically my optic nerves didn't fully develope, so I didn't have the sight I have now till I was about 3 or so.
The experts tell me I have approximately 8% vision, but one eye is a little better than the other. What I can see depends on colour and contrast.
TheMuso
I have bilateral microphthalmia, and colobomas. So I have small eyes, both of them, and wear these shells, I'm totally blind now, no light perception, but it's all good with me. To answer your question caitlin, I don't really care about having sight, it doesn't matter because yeah. I am happy the way I am, and I think being blind is kinda fun.
I have quite a few eye conditions in my left eye. When I was born, I had an opaque cornea and my retinas became detached. I had a Corneal graft when I was six months old which didn't work and two more ops on my retinas when I was 8 months and again at 11 months old, but they didn't work either, so I was registered blind when I was one year old. I have an ophthalmea in my right, which basically means you're missing an eyeball and in my case, have an extremely small eyelid so I'd have to have an expander fitted for a year or so if I wanted a false eye on the right. My whole face either has parts missing or parts which don't function very well and the right side of my face is actually smaller than the left side. I had another 12 ops on my mouth as I also have a huge cleft palette going all the way from my top lip, up my nose and back in to my airway which could've killed me when I was born if the surgeons at a nearby hospital hadn't known how they'd try and fix it. I'm also moderately deaf in my right ear and have to wear a hearing aid sometimes. No-one knows how it happened, but we do know it's a syndrome as we went to see a genetticist to actually find out if it was genettic and if I could pass it on to my children because I wanted and do still want to have children at some point so I just had to know. There are only 24 recorded cases of my condition and one involved two children who were born to a diabetic mother and there's a history of diabetes in my family, my great Grandmother was one and she died in a diabetic coma at the age of 52 so it does worry me slightly, but not too much. I just try and enjoy life as much as i can, to the full.
I have quite a few eye conditions in my left eye. When I was born, I had an opaque cornea and my retinas became detached. I had a Corneal graft when I was six months old which didn't work and two more ops on my retinas when I was 8 months and again at 11 months old, but they didn't work either, so I was registered blind when I was one year old. I have an ophthalmea in my right, which basically means you're missing an eyeball and in my case, have an extremely small eyelid so I'd have to have an expander fitted for a year or so if I wanted a false eye on the right. My whole face either has parts missing or parts which don't function very well and the right side of my face is actually smaller than the left side. I had another 12 ops on my mouth as I also have a huge cleft palette going all the way from my top lip, up my nose and back in to my airway which could've killed me when I was born if the surgeons at a nearby hospital hadn't known how they'd try and fix it. I'm also moderately deaf in my right ear and have to wear a hearing aid sometimes. No-one knows how it happened, but we do know it's a syndrome as we went to see a genetticist to actually find out if it was genettic and if I could pass it on to my children because I wanted and do still want to have children at some point so I just had to know. There are only 24 recorded cases of my condition and one involved two children who were born to a diabetic mother and there's a history of diabetes in my family, my great Grandmother was one and she died in a diabetic coma at the age of 52 so it does worry me slightly, but not too much. I just try and enjoy life as much as i can, to the full.
I have quite a few eye conditions in my left eye. When I was born, I had an opaque cornea and my retinas became detached. I had a Corneal graft when I was six months old which didn't work and two more ops on my retinas when I was 8 months and again at 11 months old, but they didn't work either, so I was registered blind when I was one year old. I have an ophthalmea in my right, which basically means you're missing an eyeball and in my case, have an extremely small eyelid so I'd have to have an expander fitted for a year or so if I wanted a false eye on the right. My whole face either has parts missing or parts which don't function very well and the right side of my face is actually smaller than the left side. I had another 12 ops on my mouth as I also have a huge cleft palette going all the way from my top lip, up my nose and back in to my airway which could've killed me when I was born if the surgeons at a nearby hospital hadn't known how they'd try and fix it. I'm also moderately deaf in my right ear and have to wear a hearing aid sometimes. No-one knows how it happened, but we do know it's a syndrome as we went to see a genetticist to actually find out if it was genettic and if I could pass it on to my children because I wanted and do still want to have children at some point so I just had to know. There are only 24 recorded cases of my condition and one involved two children who were born to a diabetic mother and there's a history of diabetes in my family, my great Grandmother was one and she died in a diabetic coma at the age of 52 so it does worry me slightly, but not too much. I just try and enjoy life as much as i can, to the full.
O the flipping Zone! Didn't mean to send that post three times!
i, I have quite a number of eye conditions. First, I was born with Cateracts on both eyes. But they removed all but one when I was a year old, which made me legally blind. That means I had about 20/40 in my best (right) eye and about 10/20 in my worst (left) eye. I was fine with that until age 18 when I developed Glaucoma. That eventually caused my Retna to detach in my good eye. I now have no vision in my right eye which was my good eye and a little tunnel in my left eye which was my bad eye. I also now have an artificial right eye. Strange isn't it? I'm learning to ajust to my vision now. because of my Diabetes I have to be aware of the possibility of developing Diabetic Retinopthie. But given the condition of my eyes I don't know that it would make any difference. Thankfully while my son was still little my vision was fairly good. God is good even if it doesn't seem like it. Donna (djmom)
Ok, I'm not even going to bother trying to spell mine correctly...
familial exative viatralretinopothy
lol, that's the best I can do.
I was born with glaucoma. Apparently my eyes did not have the little holes where pressure is supposed to drain. When I was about two years old, my dad, who loved to take pictures of us kids, wondered why I closed my eyes and cried whenever the camera flashed. So he and mom took me back to the family pediatrician, and my glaucoma was diagnosed. I had surgery which preserved whatever amount of vision I had at that time. No one ever told me what my acuities were (20/100 is what I'm guessing based on what I know about acuities now). I went through school with a good amount of vision. I learned Braille but chose to use print and transferred to a public high school after going to blind school through the eighth grade.
Anyway, after more surgeries and continued problems with high pressure, now I am total in one eye with just light perception in the other.
I am not sure what mine is, I think it is something to do with the optic nerve. I lost my sight when I was 1 year old but don't remember ever having sight. My mum was dianogsed with diobetise when I was born if that has anything to do with it. Because of that I was born a month early. I had tomuch sugar in my blood. But I was born sighted. When I was one I took some tablets which I thought were sweets and that is how I went blind.
I'm sorry if this sounds harsh, but I think you really need to know the name of your eye condition if for no other reason than so you can sound intelligent when people ask you about it. When I was a very little child I could tell people the name of my eye condition and explain what it was to adults who didn't know. Also, every time you go to a new doctor these days, every type from general practitioners to dentists, you have to fill out (or have someone fill out for you) paperwork explaining every medical condition you have and anyone in your family has. It is important to know this information.
I also have retinopathy of prematurity.
I have that ROP or whatever it's called as well, too. I can see some light out of my left eye, but not as much as I used to be able to and I can't see anything out of my right eye, which has shrunk away over time. My left eye will probably do the same.
Like many have said, there isn't exactly a name for what's wrong with my eyes. I was born with one very small eye, and I had some light and color perception till I was in my early 30's. The vision started going in my mid 20's. I had surgery to remove a cataract, however it backfired, and I have light perception. If I try to rely on my vision to do anything, I usually get into trouble.
Lou
I have ROP. To tired to write it out lol.
I also have ROP. I had 20 or so eye surgeries to try to reattach my retinas, which my parents stopped when I was five, since they really weren't helping at all. I did have light perception until I was five but do not remember it at all, except for one time when the eye doctor turned on a light, and I told him it was one. I have been totally blind since I was five.
I also have Lebers. I do not have, nor have I ever had any functional vision apart from light perception, and I have no complaints. I have actually found the light perception to come in handy at times, such as when I will occasionally look to see whether the backlight on my cell phone is activated to determine whether the phone is actually on if it does not seem to be working properly. Also, I'm guessing the light perception has helped me to determine time of day. Other than that, it does not have much practical use.
My right eye was removed in the summer of 2005, and my light perception went with it. I wonder if that is why my cercadian rhythm's completely off.
I had a caterac and now glaucoma in my left eye, and I can see colors and can recognize some objects. Right eye is small so I have a shell I guess is what it is. I can't see a thing out of that one.
I was diagnosed with retinoblastoma at 6 months of age, and after many fruitless attempts at alternative medicine, I had my eyes removed at 9 months. By that time, the cancer had spread to the optic nerve, so some of it had to be destroyed. I agree with those who wouldn't want to regain their sight, and for many of the same reasons. There's a few aspects of sight that I'm very curious about, but not enough to want to go through with an extensive procedure, especially if there are great risks involved.
I have congenetal cateracts, dried eyes, glockcoma, and retina detachment. I am totally blind. Oh, never in a thousand years would I wish for sight. Being blind has taught me loads. If I was sighted I would be less concentrated.
I have lebers of the retina, and can only see light in my central vision and can see a little more than shadows perrifrially. Sorry for the spelling. It's funny that I saw this board today. I just got back from the doctors, and as soon as my doctor walked into the room, before addressing the reason I was there, she said that she was thinking about me because of a program she heard on npr about a man with the same condition, and he was working with a researcher and there were some results with it. So she asked when was the last time I went to the eye doctor, and I told her 04, so she said that she write me up a refarl to go and see one to ask about research. And then of course, she reminded me I should see one once a year. grin
It's great to know that I have a caring doctor, that even when she's off duty, she thinks about her patients. I already have a high opinion of her, but that just raises it even more.
Jen
I've got persistent hyperplastic primary vitreus, or is that vitrius? I forgot. ahaha
But yeah, very rare eye condition, not too much info on it.
Lol! I haven't seen the eye doctor in a while either. I am pretty stable, so...
I have had diabetes since I was 7 years old, and when I was 20, I was diagnosed with diabetic retinopathy. This condition results in the blood vessels in the back of the eye bursting so that your eye fills with blood, blocking vision. All this also caused glaucoma, detached retinas and cataracts. After a year of surgeries and laser treatments I still wound up losing all my vision.
I’ve now been blind as long as I was sighted. As for wanting my vision back, I don’t spend much time thinking about it. If it could be restored, I would probably be interested, but that does not mean I feel I am missing out on anything now. I have a very happy and fulfilled life.
Hello everyone.
I have an eye condition that I was born with called Retinopathy of Prematurity (also known as ROP). I was three months premature.
Another from the ranks of the RLF/ROP. (Why do they keep changing its name! LOL)
I'm 35 now. I had vision enough in one eye to read heavily magnified print for perhaps a year or two in elementary school, but was taught Braille at the same time, and always preferred it. The vision began to blur and fade when I was 14, and it's been completely gone, including light perception, since an operation that year, and a detached retina.
Apparently, my parents and everyone knew this would eventually happen, but no one prepared me, and it took me two years to actually take in the fact that it was permanent. My mother was particularly insensitive to my need to talk and cry about this once I realized, at the time. Tough times!
I wouldn't wish blindness on anyone, but I truly hate to hear about how this condition is a thing of the past, and how doctors now know how to prevent it. I'm glad that's the case, but I don't need to hear about it. And I also hate to hear my mother rattle on about what a "miracle baby' I was. Blah. Anyone else's parents do this? I mean, I do understand that it seems that way to her, but really...it's not true! So I weighed a pound twelve at birth, big damn deal. That doesn't make me any more blessed or special than anyone else!
And since tone of voice cannot be taken into account here, no, I am not consumed with bitterness, I'm just weary of hearing about this, and it seems I have to hear it almost every time I spend any significant time with my mother. All of that is in the past, and unimportant.
I wondered what rop stood for.
ROP is retinopathy of prematurity. Means the baby was born prematurely, and the eyes were affected because of that. (sorry for the brevity of the explanation--I should be catching a bus right now!)
I wouldn't get my sight back. Btw I have Leber's; I can see light, the general shapes of object, lots of colors, and inch block letters. There's got to be lots of contrast between the letters and background and then I really struggle keeping my focus. I'd increase it a little just to make it a slight bit more useful but really I wouldn't get it completely.
You were in the nuclear accident? Or rather, your parents were? *winces* That must suck. I know a woman who was in one, I've watched her suffer from it for years and there's nothing they can do for her. She may have survived and she does say she's glad to be alive but sometimes I wonder how anyone in that condition could stand to live. Maybe it's the grace of those who have seen and defied death.
I would have had a brother (I think, though it may have been a girl) and twin siblings. But they were either stillborn or too deformed to live. I'm glad I'm as well off as I am. Sometimes I do wonder what they would have been like had they lived; would they have been blind like me or deaf or be autistic or Aspy or have some other disability?
Kk sorry for going off topic-ish. And sorry for being depressing lol. People tell me I'm good at that sometimes...
Iyana
Haha, my eye condition and level of vision is the same as Caitlyn's, exactly the same. Also, I have cataracts, which decreased my light and shadow perception a little.
As far as getting my sight back, it would be something I might consider, depending on the risks involved with the procedure. Right now, I'd almost say I'd want sight for convenience and more independence more than anything. It would be awesome to see colors, people I care about, and everything else, but I have detailed mental pictures of these things, and that's good enough for me. Besides, I've got too much on my plate right now without adding adjustment to sight! lol!
that good old Glaucoma Dried corneas the conreas olssedd up causing horrible pain levels. now I have fake eyes love it can do little eye trick threatened to take them out if people anoy me lol just kinding and I don't won't me sight back even thoe i had good enough vision to read print and see colors shapes and stuff like that
I have glaxouma. I'm blind in my left eye but can se out of my right eye. I wqas born with cataraxts but at the age of three months I had surgery to get them removed.
I have Stickler's, which caused my retinas to detach repeatedly when I was 7 (left) and 9 (right). When the retinas failed to respond to the 13 surgeries I had, I was declared legally blind. I managed to have light perception until 2004.
It would depend upon the risks of whatever surgery would be performed and what level of vision I'd be likely to get back. If I could actually sit down and watch a movie, relearn how to read print, learn to ride a bike or drive a car, then it would definitely be worth it.
hello,
I have a condition caled septo optic displacia which means that the optic nerves have never developed. I've had this since birth. I have light perseption and shadow perseption as well. sometimes both of those can be a good thing and a bad thing as far as mobility goes. It's a good thing because I can see where a building or a pole is from a certain distance. I can also see the white lines on the crosswalk so I know to walk between the lines. it sort of a bad thing because when the sun gets in my eyes, I tend to vere off into the other direction. I know that this is a situation that can be easily remedied. Take care,
Leslie
I have juvenile polysystic astrocytoma (JPA) which is a very rare type of brain tumor that is cancerous. It is found on the optic nerve and left temperal lobe. I also have nystagmus which is uncontrolible movement of the eyes. this eye condition is actually found in many i have searching nystagmus which makes me always seem to be searching for something with my eyes. i had some site from birth till october of 1999 where the cancer took all of my sight. as for would i want it backk, it is hard to tell sinse i'm used to being blind. being able to see before i know the advantages and disadvantages of this..
I have Lebers congenital Amaurosis. I am blessed to be able to see fairly well, 20/400 in both eyes although my visual field is about 3 degrees. I have nystagmus which makes focusing almost impossible.
I have also had Optic Neuritus in the past so have experienced total blindness. The treatment for that left really bad cateracts so I was considered as having hand motion only vision for about 7 years. When the cateracts were removed 3 years ago, they put in lense implants which gave me the 20/400 correction.
I was born at 27 weeks gestation due to maternal drug use. I have ROP (retinopathy of prematurity), and cerebral palsy. I have cataracts and I've had glaucoma in my right eye. I've had a total of 5 eye surgeries. I can see a tiny bit of light in my left eye and I could see ok until I was three when the vision gradually disappeared.
I have Retinitis Pigmentosa and Stargardts (Macular degeneration). I have light perception and can detect outlines of shapes, normally shadows and some colour. I use a long cane or a Guide Dog to assist with my mobility. I am a qualified certified orienatation and Mobility specialist. I find that I am able to teach O & M without issues relating to my visual impairment arising.
This might be because I am teaching for FREE.
Hmm haven't seen anyone else reference mine: they call it, if I remember right, 'congenital agenesis of the optic nerve'. well basically means the patch cable never got installed.
Never seen light or anything else. Always assumed it to be easier than to have half-vision and half not. I get no phantom shadows or anything else others seem to describe.
I've got glaucoma and also i can seeshodows. and cataracts. and i have light. in myright. but i'm going totally blind. . i don't really. care. and i would never. wish for my vision. and i am glad i have the little sight. i have. i will go totally blind. someday.
I have cepto optic desplasia (which I probably misspelled, but oh well); the optic nerve in my brain is not fully developed... I know someone who's eye condition sounded a lot like mine, but instead of calling it cepto optic desplasia, she called it "optic nerve hypoplasia", but I'm honestly wondering whether or not there's even a difference between these two particular eye conditions.
I have retinitis pigmentosa. I had some sight when I was younger but I lost most of my sight when I was 4 or 5 years old. i can see light and some large objects if they're close enough such as buildings or trees but that's about it.
Hmm, I have RP
and to the question asked way above, yes I would definetly take an opportunity to get my eyes at 20/20... To anyone who says being blind is not an inconvenience you are crazy.
I have ROP. i can see light and some shadow in my left eye, and my right didn't grow so its still really small so I have a shell over it. I liked how poster 1 described the shadow thing, because it's pretty much what I can see as well. Although, I can see bright colors. I don't think I'd ever want my sight. I would freak out! lol
O and I was born 4 months early so my retin'as didn't develope. lol forgot the most important part.
o and here's an actual definition of ROP i found: Retinopathy of prematurity (ROP) Condition associated with premature birth, in which the growth of normal blood vessels in the retina stops, and abnormal blood vessels develop. As a result, the infant has an increased risk of detachment of the retina... there's more but that's the basics lol.
Retinitis pigmentosa here. I started losing colors and peripheral vision mid twenties. Now, in my late thirties, I make out light and some movement and I do see funny light shows and creapy flashes now and then. No useful vision though. Would I want my sight back? That is a big hesitant maybe. Ten years of slowly going blind was a nightmare. I was relieved when it was finally gone. I wouldn't want to go through a sight loss again.
I have retna opthany of premature.
I was borne blind.
That means that I had to muzh occidental in the incantatory.
My left eye was taken out in 2010, but I did not have any vision out of it anyway. My right eye was removed in 2005 due to debilitating pain, so I no longer have light perception. not sure if I brought that up in an earlier post, but there it is.
interesting in hearing about the different eye conditions and i have advanced retinitis pigmentosa, this is usually inherited but mine was not.
I am legally blind, have light perception and a tiny bit of vision still functioning but i am still losing it and will go totally blind but i am not to know when that will happen.
I have a developed small cataracts in both eyes as well as of having tiny holes in the backs of my eyes so i have to visit the eye specialist every 2 years so they can keep an eye on things.
If i had the chance to see perfectly i would take it but wouldn't want to go through the whole process of losing the vision again.
Mine was from birth and through out my life more vision was lost which i did find difficult to deal with but with determination and strength and help of a supporting mother i was able to live independently.
One thing I wonder: For people who have just light perception and then lose that, is this a real challenge to go through, like peple losing actual vision? I imagine it would be but just curious.
I got the same. "Retinitis pigmentosa". with which, I can see only lights and shadows. But it is gradually getting decreased I think so.
Raaj