Blind and Visually Impaired Community
↑
4
↓
Congenital Cataract - I little bit lost (self.Blind)
submitted by LiRibeiro
Hello everybody,
My name is Liliana, a 28 year old Portuguese girl (also first time redditor). When I was 3 years old, I had congenital cataract surgery, where both my eye lens were removed. Unfortunately, at the time no replacement lens were "putted", a nowadays standard procedure. Since then, I have to use glasses since I have hypermetropy, astigmatism, and progressive high myopia. Also, I have convergent strabismus.
When I was 18 years old, I was diagnosed with open angle glaucoma in both eyes, for which I have to use topic medication daily, and I was also diagnosed with macular degeneration (both eyes), which I have to do intra ocular injection of anti-VEGF sometimes during the year.
Nowadays, I am really struggling to work, navigate in the streets (since I'm nearsighted), and other tasks, made worse by a vitreous detachment earlier this year in March, making me seeing flies, spider webs, and clouds/haze.
During one of my last medical appointments, my doctor said that my visual acuity was 10% in my left eye and 50% in my right eye. Next week I will be doing a visual field test, to check how everything is doing since my last one was 10 years ago when I was diagnosed.
It is difficult for me to find people with the same condition in my country, so I wanted to ask if is there is anyone with a similar diagnosis. If yes, how is the disease progressing in your case? No one tells me what my prognosis is, I just wanted to ask somebody how they are adapting/coping, and what their life story is.
Thanks for reading until the end.
My name is Liliana, a 28 year old Portuguese girl (also first time redditor). When I was 3 years old, I had congenital cataract surgery, where both my eye lens were removed. Unfortunately, at the time no replacement lens were "putted", a nowadays standard procedure. Since then, I have to use glasses since I have hypermetropy, astigmatism, and progressive high myopia. Also, I have convergent strabismus.
When I was 18 years old, I was diagnosed with open angle glaucoma in both eyes, for which I have to use topic medication daily, and I was also diagnosed with macular degeneration (both eyes), which I have to do intra ocular injection of anti-VEGF sometimes during the year.
Nowadays, I am really struggling to work, navigate in the streets (since I'm nearsighted), and other tasks, made worse by a vitreous detachment earlier this year in March, making me seeing flies, spider webs, and clouds/haze.
During one of my last medical appointments, my doctor said that my visual acuity was 10% in my left eye and 50% in my right eye. Next week I will be doing a visual field test, to check how everything is doing since my last one was 10 years ago when I was diagnosed.
It is difficult for me to find people with the same condition in my country, so I wanted to ask if is there is anyone with a similar diagnosis. If yes, how is the disease progressing in your case? No one tells me what my prognosis is, I just wanted to ask somebody how they are adapting/coping, and what their life story is.
Thanks for reading until the end.
Fridux 3 points 2y ago
Welcome! I've been around this community for quite some time and this is the first time I find a fellow Portuguese citizen here!
I was born in 1982 with open angle glaucoma, have never known any better than 10% acuity out of my right eye only, and that never stopped me from doing anything except for driving (which I was legally not allowed to). However I didn't have any of your other issues, so despite being low resolution my vision was clear and had contrast until it became unstable in 2011, culminating in total blindness in 2014.
I was born to a lower-middle class family, dropped out of high-school at 17 to integrate the job market, and succeeded as a self-taught programmer when nobody expected me to have a financially stable future due to my disability coupled with my complete disregard for formal education. At 24 I moved out to live a fully independent life in Lisbon, where I stayed until 30, after my vision began to deteriorate.
At some point I lost hope that my vision would return to normal so I filed for my disability benefits (which I had never taken advantage of despite having been entitled to all along), and moved back to live with my parents. Since I contributed a lot to social security during my active years my disability benefits ended up being enough to keep me afloat and still save some money at the end of the month, so despite being legally allowed to without losing my benefits, I don't really need to work anymore.
Nowadays I spend my time either procrastinating on the Internet or working on personal programming projects, something that I wanted to do all along but had no time to back when I had sight. However the process of losing my sight was extremely hard for me, and in fact until last year all I wanted was to die due to the boredom that I felt until I figured out that I could actually code blind.
As far as my experience is concerned, the first sign that I was losing my vision was neither a raise in pressure nor the loss of vision field but rather the loss of contrast and color perception as well as dimming vision, all signs that my physicians unfortunately ignored. This, coupled with the lack of proper equipment such as optical coherence tomography scanners that could have diagnosed optic nerve damage much sooner, led them to believe that my issues were a result of something else, like a cataract that I developed in late-2012.
I was born in 1982 with open angle glaucoma, have never known any better than 10% acuity out of my right eye only, and that never stopped me from doing anything except for driving (which I was legally not allowed to). However I didn't have any of your other issues, so despite being low resolution my vision was clear and had contrast until it became unstable in 2011, culminating in total blindness in 2014.
I was born to a lower-middle class family, dropped out of high-school at 17 to integrate the job market, and succeeded as a self-taught programmer when nobody expected me to have a financially stable future due to my disability coupled with my complete disregard for formal education. At 24 I moved out to live a fully independent life in Lisbon, where I stayed until 30, after my vision began to deteriorate.
At some point I lost hope that my vision would return to normal so I filed for my disability benefits (which I had never taken advantage of despite having been entitled to all along), and moved back to live with my parents. Since I contributed a lot to social security during my active years my disability benefits ended up being enough to keep me afloat and still save some money at the end of the month, so despite being legally allowed to without losing my benefits, I don't really need to work anymore.
Nowadays I spend my time either procrastinating on the Internet or working on personal programming projects, something that I wanted to do all along but had no time to back when I had sight. However the process of losing my sight was extremely hard for me, and in fact until last year all I wanted was to die due to the boredom that I felt until I figured out that I could actually code blind.
As far as my experience is concerned, the first sign that I was losing my vision was neither a raise in pressure nor the loss of vision field but rather the loss of contrast and color perception as well as dimming vision, all signs that my physicians unfortunately ignored. This, coupled with the lack of proper equipment such as optical coherence tomography scanners that could have diagnosed optic nerve damage much sooner, led them to believe that my issues were a result of something else, like a cataract that I developed in late-2012.
LiRibeiro [OP] 2 points 2y ago
Hello! It is very comforting finding other portugueses redditors with similar background. Living with these type of diseases is quite difficult, mentally and physically. This year all what I thought was "What the hell I am doing here? I have two degenerative eye diseases, this is a hell living like this." The eyes are so important. I am now accepting, very slowly (baby steps) what I have. And I am trying to not think about the future of going blind. One of my doctors told my that the 50% in my right eye is a number but in life quality, is very less because all of my problems. Parallel, I work in a IT company. I am not a coder, I am a SAP consultant. I do a lot of corrective and upgrades in that system. I am adapting my computer with magnifiers, black contrast, all of type of zooms and tricks. Sometimes, even that, is not enough. My eyes get very tired in a matter of hours. I sometimes I need to work more that 8 hours.
Nowadays, I do not have any disability benefits. I trying to search that to find if I am a candidate to have a adapted work station but with this pandemic phase, everything is stoped.
Sorry for all my testimony but is very fulfilling for me to find other life experiences.
Additionally, for my curiosity, how did you adapt your computer for coding? How do you do your mobility? Nowadays, sometimes I need to use a cane (green one that seems to be for low vision people).
I hope mentally, you stay strong. I am "fighting" to keep me optimistic and finding people "like" me is quite encouraging. So for that, thank you. And I am sorry for all my questions. You only reply it if you feel comfortable. I am just a curious person, trying to find courage and tools to keep my active life and work.
Nowadays, I do not have any disability benefits. I trying to search that to find if I am a candidate to have a adapted work station but with this pandemic phase, everything is stoped.
Sorry for all my testimony but is very fulfilling for me to find other life experiences.
Additionally, for my curiosity, how did you adapt your computer for coding? How do you do your mobility? Nowadays, sometimes I need to use a cane (green one that seems to be for low vision people).
I hope mentally, you stay strong. I am "fighting" to keep me optimistic and finding people "like" me is quite encouraging. So for that, thank you. And I am sorry for all my questions. You only reply it if you feel comfortable. I am just a curious person, trying to find courage and tools to keep my active life and work.
Fridux 1 points 2y ago
> Hello! It is very comforting finding other portugueses redditors with similar background. Living with these type of diseases is quite difficult, mentally and physically. This year all what I thought was "What the hell I am doing here? I have two degenerative eye diseases, this is a hell living like this." The eyes are so important. I am now accepting, very slowly (baby steps) what I have. And I am trying to not think about the future of going blind. One of my doctors told my that the 50% in my right eye is a number but in life quality, is very less because all of my problems. Parallel, I work in a IT company. I am not a coder, I am a SAP consultant. I do a lot of corrective and upgrades in that system. I am adapting my computer with magnifiers, black contrast, all of type of zooms and tricks. Sometimes, even that, is not enough. My eyes get very tired in a matter of hours. I sometimes I need to work more that 8 hours.
I didn't use to understand why people with much higher acuity than me had more problems than I did, but after beginning to lose contrast perception in 2011 it finally clicked. Visual acuity is overrated in my opinion, and unfortunately legally speaking it's the most important factor contributing to your disability score, so due to that I've always been considered disabled, because with 10% acuity out of one eye I had a 75% disability rating, which is well above the 60% threshold required to be considered disabled in Portugal, and this is despite the fact that I actually lived a fairly normal life.
> Additionally, for my curiosity, how did you adapt your computer for coding? How do you do your mobility? Nowadays, sometimes I need to use a cane (green one that seems to be for low vision people).
I use a screen-reader called VoiceOver that comes built into both MacOS and iOS. A screen-reader is a service that enables special key combinations and touch gestures to allow controlling visual interfaces that traditionally require the use of a pointing device, and in addition conveys the content of the screen to a blind user through a speech synthesizer or a Braille display. Since I struggle a lot with Braille I only use the speech synthesizer, which works fine most of the time.
Regarding mobility I'm not a very independent person beyond using computers. I live with my mother who does some of the errands, and we do employ a maid to do the housekeeping. When I do have to go out alone I use a long white cane, and despite not training much, my sense of orientation is fairly good, but I've always had trouble trusting my own skills, so I try not to be on my toes, which means I never leave my comfort zone.
> I hope mentally, you stay strong. I am "fighting" to keep me optimistic and finding people "like" me is quite encouraging. So for that, thank you. And I am sorry for all my questions. You only reply it if you feel comfortable. I am just a curious person, trying to find courage and tools to keep my active life and work.
I'm mentally stable now but it hasn't always been that way. I've been totally blind for 6 years, and during the first 5 all I wanted was to die, not due to depression, but because I was extremely bored. The realization that coding blind was within my reach changed things though, so now I simply don't care about my blindness most of the time.
I didn't use to understand why people with much higher acuity than me had more problems than I did, but after beginning to lose contrast perception in 2011 it finally clicked. Visual acuity is overrated in my opinion, and unfortunately legally speaking it's the most important factor contributing to your disability score, so due to that I've always been considered disabled, because with 10% acuity out of one eye I had a 75% disability rating, which is well above the 60% threshold required to be considered disabled in Portugal, and this is despite the fact that I actually lived a fairly normal life.
> Additionally, for my curiosity, how did you adapt your computer for coding? How do you do your mobility? Nowadays, sometimes I need to use a cane (green one that seems to be for low vision people).
I use a screen-reader called VoiceOver that comes built into both MacOS and iOS. A screen-reader is a service that enables special key combinations and touch gestures to allow controlling visual interfaces that traditionally require the use of a pointing device, and in addition conveys the content of the screen to a blind user through a speech synthesizer or a Braille display. Since I struggle a lot with Braille I only use the speech synthesizer, which works fine most of the time.
Regarding mobility I'm not a very independent person beyond using computers. I live with my mother who does some of the errands, and we do employ a maid to do the housekeeping. When I do have to go out alone I use a long white cane, and despite not training much, my sense of orientation is fairly good, but I've always had trouble trusting my own skills, so I try not to be on my toes, which means I never leave my comfort zone.
> I hope mentally, you stay strong. I am "fighting" to keep me optimistic and finding people "like" me is quite encouraging. So for that, thank you. And I am sorry for all my questions. You only reply it if you feel comfortable. I am just a curious person, trying to find courage and tools to keep my active life and work.
I'm mentally stable now but it hasn't always been that way. I've been totally blind for 6 years, and during the first 5 all I wanted was to die, not due to depression, but because I was extremely bored. The realization that coding blind was within my reach changed things though, so now I simply don't care about my blindness most of the time.
LiRibeiro [OP] 1 points 2y ago
Yes. Visual acuity is very overrated to the disability score. It is a shame because it is not all, even a equal part comparing to other factors. But it is what it is.
Unfortunately, in a matter of a couple a days a notice some changes. For the worst, of course... And tomorrow I have the doctor's appointment to do the visual field test and the detail report, so I will tell her about these changes. I know, once again, I am seeing less. This gets to a point that I am very tired with all exams , all anxiety, manage work. But what can I say: "Never give up?" And legally speaking, I cannot stop.
Thank you very much for helping me. I know the problems are not comparable but with all my diseases, I just know that my eyes will "shut down" eventually.
For me is quite important to find other portuguese fellas here. Really helpful. And I send a big hug to you for answering all my doughts. I know do not know each other but I am glad that you found coding a very enjoyable activity for you!
Unfortunately, in a matter of a couple a days a notice some changes. For the worst, of course... And tomorrow I have the doctor's appointment to do the visual field test and the detail report, so I will tell her about these changes. I know, once again, I am seeing less. This gets to a point that I am very tired with all exams , all anxiety, manage work. But what can I say: "Never give up?" And legally speaking, I cannot stop.
Thank you very much for helping me. I know the problems are not comparable but with all my diseases, I just know that my eyes will "shut down" eventually.
For me is quite important to find other portuguese fellas here. Really helpful. And I send a big hug to you for answering all my doughts. I know do not know each other but I am glad that you found coding a very enjoyable activity for you!
PedroBaltazarRelvas 1 points 2y ago
Hi Fridux, my name is Pedro. As I was reading your comments, I really felt ashamed of my problems and complaints (you can read my story below your comment), I'm still working but I'm anxious and depressed all the time now, not because of losing sight (yet) but because of the doubt, the fear that I have to stop someday what I really like... and also because of the colateral effects of the treatment to NVC. I want to say thanks to you, because you really showed me that it is possible to have a life if something goes wrong with me. You seem to be a great person. Thanks again.
PedroBaltazarRelvas 2 points 2y ago
Hi Liliana! My name is Pedro and I'm also portuguese. I was born in 1992 and I lived quite good without any eye problems until I detached my retina of the right eye at the age of 10. The chirurgie went well, and I was back on track again. At the age of 11 I had some internal bleeding in the left eye that left my vision with a lot of floating blood, but with time most of it just disappeared. At the age of 12, same thing happened in the same eye. The doctors never solved the mystery of it, but the blood clenead itself. When I was 20 years old I started to feel pain, see halos in lights, felling a lot a nausea, blurred vision and other problems in the right eye. It was hell. During 7 years (yes, 7 years) I tried different doctors (3 in total, and one of them I kept for a long time, unfortunately ), I asked them if it wasn't glaucoma because the internet said it was (all of the symptoms were right) and all of them decline it. One of the doctors said to me quite angry: "it is not glaucoma, you have to put in your head that you have a damaged eye, and that's how it goes". May 4 of 2020 one doctor in less than 10 minute diagnosed me with closed angle glaucoma (right eye) and open angle glaucoma in the left. Even with drops the pressure on the right eye doesn't got low, so I had to go under knife to solve the problem (with this he removed a catarata too for aught I know). I don't see quite well of my right, it's difficult to read with it. Today I was diagnosed with NVC, what can damage my retina in the left eye (the one which keeps me on track), and to be honest I'm anxious about it. I will start the treatments next week, I think so. I'm a designer and Front-end Developer and I really need my vision to do this type of work, but I don't know if it will be possible to do it in long term... I think it is normal for you to feel lost, who doesn't?
LiRibeiro [OP] 2 points 2y ago
Hello Pedro. I am glad that I am discovering other portugueses with similar problems, regarding the different background or amount of diseases and/or visual acuity. I struggled a lot to know more young people with these type of problems. Only more old people, ahead 50 or 60 years old begin to develop these kind of problems.
When they remove your cataract, did you get an intraocular lens?
I am speechless about what you said. I know that glaucoma normally a silent disease but you add all the symptoms!! When they diagnosed me with open angle, they told me that because of the damage, I had it for many years but the symptoms only developed in 2011. I know I have nowadays a lot of damage in my peripheral vision and optic nerves.
Can I ask you, nowadays, which hospital do you go?
All of the experience that I have, I went to a lot of doctors too, maybe around 7 and unfortunately, some were very very bad doctors and human beings. Zero patience and zero explanations.
Do you know your visual acuity and they did a field visual test?
When you say NVC is choroidal neovascularization? Which the treatment is intraocular injections? Is what I do nowadays. Actually is the only thing they can do to my eyes.
It is very normal to feel lost. I am in a long path of accepting these diseases. It is not easy. All days are different. Sometimes I fell I can be strong, no matter what, other days I am struggling to accept. For me, some of the worst parts are the unknown of the progression and my eyes get very tired.
I work in IT too. I am in SAP consulting. So a lot of testing bugs, building solutions with developers, etc. So, like you, I am afraid too. But I know, for what I am reading until today, even if this get worst for me, I can work too. I will be a long period of adaption and struggles, but everything is possible. Step by step. Not easy but not impossible. If there is something that I cannot do, I will try to find other forms with my company.
When they remove your cataract, did you get an intraocular lens?
I am speechless about what you said. I know that glaucoma normally a silent disease but you add all the symptoms!! When they diagnosed me with open angle, they told me that because of the damage, I had it for many years but the symptoms only developed in 2011. I know I have nowadays a lot of damage in my peripheral vision and optic nerves.
Can I ask you, nowadays, which hospital do you go?
All of the experience that I have, I went to a lot of doctors too, maybe around 7 and unfortunately, some were very very bad doctors and human beings. Zero patience and zero explanations.
Do you know your visual acuity and they did a field visual test?
When you say NVC is choroidal neovascularization? Which the treatment is intraocular injections? Is what I do nowadays. Actually is the only thing they can do to my eyes.
It is very normal to feel lost. I am in a long path of accepting these diseases. It is not easy. All days are different. Sometimes I fell I can be strong, no matter what, other days I am struggling to accept. For me, some of the worst parts are the unknown of the progression and my eyes get very tired.
I work in IT too. I am in SAP consulting. So a lot of testing bugs, building solutions with developers, etc. So, like you, I am afraid too. But I know, for what I am reading until today, even if this get worst for me, I can work too. I will be a long period of adaption and struggles, but everything is possible. Step by step. Not easy but not impossible. If there is something that I cannot do, I will try to find other forms with my company.
PedroBaltazarRelvas 2 points 2y ago
Hi! Yes, they put the lens. But even with that I can't read so well as I do with the left eye, it's not even comparable. I'm so sorry that you didn't have the same privilege as me when you were a kid... I really am.
Yes, choroidal neovascularization. Day by day I feel more angry about it, I'm so afraid of the coletoral effects and I don't even know if my insurance cover the costs. Do you feel alright with the injections? How is it?
I am going to Hospital da Luz in Póvoa do Varzim and Amarante.
No, I don't know my visual acuity, but I will ask for it.
For now, I don't know what to do, I really can't have a good sleep or enjoy a simple meal... But it will pass, I think so. Glad for your response and words, it means a lot to me. Thanks.
Yes, choroidal neovascularization. Day by day I feel more angry about it, I'm so afraid of the coletoral effects and I don't even know if my insurance cover the costs. Do you feel alright with the injections? How is it?
I am going to Hospital da Luz in Póvoa do Varzim and Amarante.
No, I don't know my visual acuity, but I will ask for it.
For now, I don't know what to do, I really can't have a good sleep or enjoy a simple meal... But it will pass, I think so. Glad for your response and words, it means a lot to me. Thanks.
LiRibeiro [OP] 2 points 2y ago
Hello Pedro. In 1996, all state of art were not comparable with today. So in that point, they did not put any lens. Which, unfortunately, raised the probability to have all these issues. Not genetic, not explainable, random unlucky.
In the pass ten years, I had injections in both eyes. First I did go to a private hospital. You have 3 types of injections: AVASTIN, ELYA, and LUCENTIS. Because in my insurance I put myopia, they declined all expensives help. But, at that time I had no choice because I was in the waiting list to access a public hospital. So at that time my parents help me with the expensives. I remember that for a ELYA injection in 2011 I paid 1750 euros. Nowadays, in that private clinic, I think ELYA and LUCENTIS are around 1320 euros. AVASTIN is cheaper, around 600 euros. Which ate the end, I start to have it because of the difference of prices. The effect of the injections depend person to person. Sometimes I had to do once 2 in to 2 months, sometimes the time was 4, 5, 6 months. Like I said, very variable.
My luck was that I was admitted in Instituto Dr. Gama Pinto, a public ophthalmologic hospital in Lisbon. My last injection was 2 months ago with ELYA.
I will not lie to you. At first, it was very difficult all the process but it is very quick. In the injection room it only takes 2 minutes and you are ok to go home and rest. I always ask for two days off because I cannot work in the same or next day in a computer.
The injections can maintain or, in some cases, get your vision better.
If you have more questions, I am a professional in having injections!
An advice, try to control your anxiety. I know (really know) that is not easy but the stress and anxiety can inflence for the worst your eyes.
In the pass ten years, I had injections in both eyes. First I did go to a private hospital. You have 3 types of injections: AVASTIN, ELYA, and LUCENTIS. Because in my insurance I put myopia, they declined all expensives help. But, at that time I had no choice because I was in the waiting list to access a public hospital. So at that time my parents help me with the expensives. I remember that for a ELYA injection in 2011 I paid 1750 euros. Nowadays, in that private clinic, I think ELYA and LUCENTIS are around 1320 euros. AVASTIN is cheaper, around 600 euros. Which ate the end, I start to have it because of the difference of prices. The effect of the injections depend person to person. Sometimes I had to do once 2 in to 2 months, sometimes the time was 4, 5, 6 months. Like I said, very variable.
My luck was that I was admitted in Instituto Dr. Gama Pinto, a public ophthalmologic hospital in Lisbon. My last injection was 2 months ago with ELYA.
I will not lie to you. At first, it was very difficult all the process but it is very quick. In the injection room it only takes 2 minutes and you are ok to go home and rest. I always ask for two days off because I cannot work in the same or next day in a computer.
The injections can maintain or, in some cases, get your vision better.
If you have more questions, I am a professional in having injections!
An advice, try to control your anxiety. I know (really know) that is not easy but the stress and anxiety can inflence for the worst your eyes.
PedroBaltazarRelvas 2 points 2y ago
The financial impact is big so... I hope my insurance help me. I'm sorry for my ignorance, but if the insurance rejects my needs, can I be a candidate to have the injections in the public hospital? How much time did you wait? Can I ask you what type of coletoral effects the injections had in you? The time between injections depend on what? Thank you so much.
curiouscat_222 2 points 2y ago
Hi Liliana, Sorry I can't really be of much help myself or give you any advice, but just wanted to say hope it goes well next week for your visual field test x
LiRibeiro [OP] 1 points 2y ago
Thank you very much for your comment. I hope it goes well too! I know I am not blind and my vision acuity seems to make me a person who does not need "help", like a cane but nowadays it is not what I feel. I am struggling with some daily activities, mostly outside. Once again, thank you for your reply!!
curiouscat_222 2 points 2y ago
My pleasure, just wishing you all the best, you sound like a tough little cookie! 💪🏼
This nonprofit website is run by volunteers.
Please contribute if you can. Thank you!
Our mission is to provide everyone with access to large-
scale community websites for the good of humanity.
Without ads, without tracking, without greed.
scale community websites for the good of humanity.
Without ads, without tracking, without greed.
©2023 HumbleCat Inc • HumbleCat is a 501(c)3 nonprofit based in Michigan, USA.