Blind and Visually Impaired Community
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My experience with pathological myopia (self.Blind)
submitted by TurbulentYak7
Hi everyone. I know these posts are common around here, but I really need to vent. I’m a 19-year-old guy from Australia.
I have a degenerative eye condition called pathological myopia. From what I understand, I have collagen deficiency in both my eyes. In healthy eyes, the sclera is stiff, rigid and strong so it is able to resist expansionary pressures. However, the opposite is true for me, which means that my eyes have become extremely elongated. Eventually, this stretching will cause the retina to thin out and die.
I usually wear contacts, and that means that no one has the faintest clue that there’s something wrong with me. With correction, my vision is roughly 20/20 but my eyesight is far from perfect. I experience regular flashes, large floaters, enlarged blind spots, poor night vision, sensitivity to light, halos, glare and black spots that appear and disappear for brief moments. It sickens me whenever I notice that the world has become more hazy than it was before. I know it’s all downhill from here. If I’m lucky I might have another forty years before I’m legally blind. If I’m unlucky, I might have around 5-10 years left.
I have obsessively researched my condition and I have literally read hundreds of medical research journals by this point. It’s scary to see the limits of modern medicine. Treatment options, long term prognosis and signs for early diagnosis seem to be limited and poorly understood. Discouragingly, I’ve come across articles from the early 2000s predicting that scleral collagen crosslinking, a potential treatment to slow down the disease, would be available for use by now, but almost two decades later, they still haven’t progressed beyond animal testing. My only hope at this point are stem cells. They can potentially regenerate the retina and strengthen the sclera. However, even in the best case scenario, it will still take several decades for the technology to mature and enter mainstream use. There’s also no guarantee that it’ll be as effective as researchers hope and it’s certainly going to cost a fortune.
Some people have the audacity to suggest that I have somehow brought this disease on myself. If only I spent more time outdoors or if I spent less time on my electronics... Words can’t describe how upset I get when I hear things like this. They fail to understand that I’ve already tried all that. They neglect the fact that my dad, siblings, cousins, aunts and uncles all have high myopia- an obvious genetic cause.
For a while I blamed my condition on my parents. I blamed the optometrists and ophthalmologists for failing to diagnose me earlier. I’ve spent countless nights awake asking: Why me? But now I’ve moved past that.
Yet, I still feel helpless. There’s nothing I can do about it and I know I need to get on with my life. I try not to obsess about it anymore. But the thought of my eyesight deteriorating always lingers in the back of my mind. On one hand, this motivates me to improve my life and step out of my comfort zone, as I try to make the best use of my remaining time as a sighted person. But sometimes, I ask myself, what’s the point of it all? Why should I bother to keep studying at uni, to learn to drive, to have relationships etc.? What if it’s all for nothing? Sometimes I think better days are just around the corner. Other times, I think that I’ll always be stuck in this pit and all my efforts to climb out are futile.
My future seems so uncertain. I feel like such a burden sometimes. I don’t know if I’m going to be able to find a job that I’ll be happy with. I’m scared that no one will ever love me once they find out that I’ll be blind one day. I’m so lonely and I’m terrified by the thought that I might die alone. I’m afraid that I’ll pass on this condition if I ever decide to have children. I think that I have already wasted my part of my life and sight by living in isolation for so long (in fact, my life barely changed once lockdowns were introduced). And now I feel guilty for having these thoughts because I know that there are people who are in positions much worse than mine and yet they have overcome these challenges, and so much more.
Please tell me there’s someone out there who can relate to this.
I have a degenerative eye condition called pathological myopia. From what I understand, I have collagen deficiency in both my eyes. In healthy eyes, the sclera is stiff, rigid and strong so it is able to resist expansionary pressures. However, the opposite is true for me, which means that my eyes have become extremely elongated. Eventually, this stretching will cause the retina to thin out and die.
I usually wear contacts, and that means that no one has the faintest clue that there’s something wrong with me. With correction, my vision is roughly 20/20 but my eyesight is far from perfect. I experience regular flashes, large floaters, enlarged blind spots, poor night vision, sensitivity to light, halos, glare and black spots that appear and disappear for brief moments. It sickens me whenever I notice that the world has become more hazy than it was before. I know it’s all downhill from here. If I’m lucky I might have another forty years before I’m legally blind. If I’m unlucky, I might have around 5-10 years left.
I have obsessively researched my condition and I have literally read hundreds of medical research journals by this point. It’s scary to see the limits of modern medicine. Treatment options, long term prognosis and signs for early diagnosis seem to be limited and poorly understood. Discouragingly, I’ve come across articles from the early 2000s predicting that scleral collagen crosslinking, a potential treatment to slow down the disease, would be available for use by now, but almost two decades later, they still haven’t progressed beyond animal testing. My only hope at this point are stem cells. They can potentially regenerate the retina and strengthen the sclera. However, even in the best case scenario, it will still take several decades for the technology to mature and enter mainstream use. There’s also no guarantee that it’ll be as effective as researchers hope and it’s certainly going to cost a fortune.
Some people have the audacity to suggest that I have somehow brought this disease on myself. If only I spent more time outdoors or if I spent less time on my electronics... Words can’t describe how upset I get when I hear things like this. They fail to understand that I’ve already tried all that. They neglect the fact that my dad, siblings, cousins, aunts and uncles all have high myopia- an obvious genetic cause.
For a while I blamed my condition on my parents. I blamed the optometrists and ophthalmologists for failing to diagnose me earlier. I’ve spent countless nights awake asking: Why me? But now I’ve moved past that.
Yet, I still feel helpless. There’s nothing I can do about it and I know I need to get on with my life. I try not to obsess about it anymore. But the thought of my eyesight deteriorating always lingers in the back of my mind. On one hand, this motivates me to improve my life and step out of my comfort zone, as I try to make the best use of my remaining time as a sighted person. But sometimes, I ask myself, what’s the point of it all? Why should I bother to keep studying at uni, to learn to drive, to have relationships etc.? What if it’s all for nothing? Sometimes I think better days are just around the corner. Other times, I think that I’ll always be stuck in this pit and all my efforts to climb out are futile.
My future seems so uncertain. I feel like such a burden sometimes. I don’t know if I’m going to be able to find a job that I’ll be happy with. I’m scared that no one will ever love me once they find out that I’ll be blind one day. I’m so lonely and I’m terrified by the thought that I might die alone. I’m afraid that I’ll pass on this condition if I ever decide to have children. I think that I have already wasted my part of my life and sight by living in isolation for so long (in fact, my life barely changed once lockdowns were introduced). And now I feel guilty for having these thoughts because I know that there are people who are in positions much worse than mine and yet they have overcome these challenges, and so much more.
Please tell me there’s someone out there who can relate to this.
katchafire99 2 points 2y ago
I have an autoimmune disease i went blind in my left eye over night, i am sitting here waiting to hit my right eye. Im in my 30s just waiting to go blind im scared i have no skills that i can do with limited vision my whole life and my childrens are wrapped around if i can work. Im scared and lonely. All i can suggest is find things you can do with limited to low vision now. You have the time, i didnt get that so use it, learn to read braille learn all the things you need to know blind now. Because sudden blindness sucks balls mate
TurbulentYak7 [OP] 1 points 2y ago
I'm so sorry that you're going through this. I appreciate your advice.
wradam 2 points 2y ago
I can partially relate to that, I have a high myopia, also possibly caused by genetics. On top of that, I did PRK when I was 25 hoping to have "at least 5 years without glasses (cant use contact lenses due to extremely sensitive cornea) and then let it happen whatever it is" as my myopia never stopped progressing. In 10 years I noticed my eyesight was getting worse again so I wanted to do another laser surgery but I was told no as cornea was too thin. Besides, suddenly I was diagnosed with glaucoma of both eyes. I immediately felt just like you - what is the sense in work, studying etc when I can go blind next year or in five years. Glaucoma is not always predictable.
But eventually I overcame this. I thought to myself that if I try to do what I want/should, It may happen so that I will manage to achieve before I go blind, or even if I go blind I will still manage to achieve it.
Besides, you never know, maybe I get infected and die from COVID or in a car crash etc before I go blind. Just think about it. You must not stop enjoying an living your life now just because you can go blind in 5 years or in 40 years. Also, find some blind people blogs on youtube. Many of them live norrnal lives. It ia not the end of your "personal" world if you go blind, you can read (with your fingers), hear, talk, eat, drink, walk, work, etc.
But eventually I overcame this. I thought to myself that if I try to do what I want/should, It may happen so that I will manage to achieve before I go blind, or even if I go blind I will still manage to achieve it.
Besides, you never know, maybe I get infected and die from COVID or in a car crash etc before I go blind. Just think about it. You must not stop enjoying an living your life now just because you can go blind in 5 years or in 40 years. Also, find some blind people blogs on youtube. Many of them live norrnal lives. It ia not the end of your "personal" world if you go blind, you can read (with your fingers), hear, talk, eat, drink, walk, work, etc.
TurbulentYak7 [OP] 2 points 2y ago
Thanks. I know you're right. It's just going to take a while for me to come to terms with it.
pinkpiggildy 1 points 2y ago
How bad is your vision anyway? Do you have any retinal detachments, glaucoma, AMD, neovascularization etc? Because if not, it’s more likely that you will still have your eyesight for years.
TurbulentYak7 [OP] 1 points 2y ago
My prescription is -15D in both eyes. I also have a posterior staphyloma in both eyes. So my long term prognosis doesn't look too good. The scary thing is, no one can say how much vision I'll lose, or how quickly I'll lose it. Thankfully, I haven't developed any retinal tears, glaucoma or CNV, *yet*.
pinkpiggildy 1 points 2y ago
Well I have almost -15 in one eye (if you’d add astigmatism) and -8 in the other. Both have minor posterior staphyloma. I’m a few years older than you - 28. So I definitely can relate and I know how you feel.
I was super scared when I heard about staphylomas (last year actually) and of course googling like crazy. I knew that this means that I have degenerative myopia. So I was convinced that I’m doomed. I will be blind. How will I manage? How will I function in everyday life? Might as well jump off the bridge right now.
But my doctor said that the downside of staphylomas is that my myopia can slowly progress. Sclera is a bit thinner there so it has to be observed with more attention. Other than that, it’s mostly fine. It progresses for years, depending when the staphylomas are located. The one near macula is the worst. But it’s not like it’s a death sentence. There are treatments to strengthen that part of the eye (sorry but I don’t know how it’s called in English!). There are treatments for glaucoma, AMD, scleral issues. Yes, it’s more likely for us to get those diseases in the older age. I remember when I was somewhere your age and I was crying at the doctors office because of how bad my vision was and how scared I was. I was anxious about retinal detachments (10 years later, no sign of it). And the doctor just said to me: well if you’d get a retinal year, we can just laser it up. It’s a standard procedure!
But there are still people who lose their eyesight in the car crash, or go the doctor when they can’t see anything and find out that they have major glaucoma which can be treated.
There’s a big chance that you will have good vision for years after you will develop some side conditions. It’s not like we can do anything other than regular check-ups and trying to live normally. I too am very anxious about my health and sometimes it hits me so hard! But I just put my contact lenses on and carry on. I studied in college, work in the office, drive a car everyday. I got married a few years ago and am currently pregnant. You are not blind right now. You don’t know if you will be blind for sure. I remember when I was diagnosed as a kid and the treatment options were very limited. Now I am considering IOLs which seem like a dream come true! Seeing without my glasses? Almost impossible to me a few years ago.
Take care, go for regular check-ups and keep your head high. All we can do is hope.
I was super scared when I heard about staphylomas (last year actually) and of course googling like crazy. I knew that this means that I have degenerative myopia. So I was convinced that I’m doomed. I will be blind. How will I manage? How will I function in everyday life? Might as well jump off the bridge right now.
But my doctor said that the downside of staphylomas is that my myopia can slowly progress. Sclera is a bit thinner there so it has to be observed with more attention. Other than that, it’s mostly fine. It progresses for years, depending when the staphylomas are located. The one near macula is the worst. But it’s not like it’s a death sentence. There are treatments to strengthen that part of the eye (sorry but I don’t know how it’s called in English!). There are treatments for glaucoma, AMD, scleral issues. Yes, it’s more likely for us to get those diseases in the older age. I remember when I was somewhere your age and I was crying at the doctors office because of how bad my vision was and how scared I was. I was anxious about retinal detachments (10 years later, no sign of it). And the doctor just said to me: well if you’d get a retinal year, we can just laser it up. It’s a standard procedure!
But there are still people who lose their eyesight in the car crash, or go the doctor when they can’t see anything and find out that they have major glaucoma which can be treated.
There’s a big chance that you will have good vision for years after you will develop some side conditions. It’s not like we can do anything other than regular check-ups and trying to live normally. I too am very anxious about my health and sometimes it hits me so hard! But I just put my contact lenses on and carry on. I studied in college, work in the office, drive a car everyday. I got married a few years ago and am currently pregnant. You are not blind right now. You don’t know if you will be blind for sure. I remember when I was diagnosed as a kid and the treatment options were very limited. Now I am considering IOLs which seem like a dream come true! Seeing without my glasses? Almost impossible to me a few years ago.
Take care, go for regular check-ups and keep your head high. All we can do is hope.
TurbulentYak7 [OP] 1 points 2y ago
Thank you for sharing your experiences, I felt a little better after reading your post. I think you're right; we just have to get on with our lives and hope for the best.
[deleted] 1 points 2y ago
[deleted]
TurbulentYak7 [OP] 1 points 2y ago
I'm so glad you understand what it's like. For me, the worst part is the *uncertainty* that just looms above. It makes it so hard to plan for, or even think about the future. There's always a little voice in my head that reminds me that I'll become blind one day. The problem is that I don't when it will be. It makes it so hard to actually concentrate on anything without getting upset.
But yes, you're right, this is just the unfortunate reality we have to accept. All we can do is keep moving forward into the unknown and enjoy life as it comes, I guess.
But yes, you're right, this is just the unfortunate reality we have to accept. All we can do is keep moving forward into the unknown and enjoy life as it comes, I guess.
TindalosKeeper 1 points 2y ago
I, sadly, don't relate to you in that extreme, but my vision is far from the best.
What I could do is to give you my support.
If you need to talk to someone either via messages here in Reddit or come in Discord to text, I can do that for you! :)
What I could do is to give you my support.
If you need to talk to someone either via messages here in Reddit or come in Discord to text, I can do that for you! :)
TurbulentYak7 [OP] 1 points 2y ago
Thank you, your offer means a lot to me.
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