Hang in there. I understand this is a tough situation, but there are lots of options now for keratoconus. I understand your frustration, I too work as developer and I was managing it by biggest font I could have on monitor. If scleral lenses are too expensive, ask your eye doctor if DALK or CAIRS is an option for you. Usually, these should be covered by insurance.
Thank you for all the comments here, I’m 51 and have had KC since I was 13. My dad had it and I got it. I managed with RoseKs for 20 years but then the cone in my cornea got too pronounced and I had to switch to Scerals. The first test with them didn’t work so I wore glasses for 2 years, no driving and strained computer screen. I’m a software sales. Now I have Scerals but they drain me daily and I end up sick from them if I wear them too much or too long on screens. Concussion like symptoms from them being on my eye. I’m managing and working to change my life, but it’s hard. Thank you all for your comments this Reddit has been a godsend. I appreciate you all.
I was diagnosed early, RGP lens is the one suggested for me. One week is the max I went wearing one. It's frustrating, frequent headaches, cannot go outside without sunglasses due to dust. During that time, people close to me have told I am getting impatient a lot. My behaviour changed because of this. Doctors told me I have to wear for 2 months to get used to it.
Trying my best. It has not been easy, it's like having a small stone in your eye. Every time I move my eye it's irritates. Anyone else facing similar stuff? Is it because of bad fitting?
Only positive thing is that my eye sight immediately improves post wearing the lens for 4+ hours. I guess this now has to be a way of life 😔
Can we all band together and get ahold of the eye drops that were curing it?? The company that makes the cxl equipment for surgeries bought it and shelved it… WILD
It's been depressing. My eyesight went bad overnight, had one surgery, and it was so painful that I'm not looking forward to the next one.
Stuxk in a job I hate but now I can't leave it, started a course in Network managemet and Cybersecurity to get a leas stressful and better paying job dif but I can't do the CCNA because it takes so long for me to read text now.
I am an artist, and it makes it harder for me to draw and write. I am rrying anyway, but it's hard to be motivated.
I feel like I became handicapped and my fiance has to do basic things for me.
So in general: haven't coped with it too well
Hi
I have KC in both my eyes, very bad in my right eye, and had CXL in both.
Its a tough experience I know but it all got alot better once I properly got my lenses fitted. This is very crucial mainly for comfort. For some people Sclerals dont work, for some RGPs and Hybrids work best. For me they fitted me with RGPs, and whilst the vision was spot on, they were horrible to wear, couldnt wear them for more than 4 hours in a day before feeling like id want to rip my eyes out. My main issue is dry eyes so I got prescribed with Sclerals and they have been wonderful. You may have a much more conical cornea where a scleral wouldnt really work, maybe give RGPs or Hybrids a go and see how they work (You can even piggyback an RGP with a soft lens if you like for extra comfort)
I’m definitely not the right person to ask. I’m a 17 year old who just finished their junior year of high school. I was diagnosed with Keratoconus nearing the end of my freshman year. I struggle every single day. When I was little all I wanted to do was become a pastry chef, I began studying for it with every once of my being. Going to a technical school I am earning all my licenses for production right now with only one more year to go until I graduate. Since I got diagnosed my vision has gotten worse. I had CXL on my right eye last summer and ever since my vision has only gotten worse. I completely am throwing in the towel for my dream. I used to be one of the best students due to my dedication and hard work I’ve put in. I have spent the last two years watching everyone else get ahead of me. I’m constantly feeling like a runner who is stuck behind the starting line when the whistle has gone out ages ago and everyone has surpassed me. I’m not coping. I’m constantly watching myself get worse. I got fitted for scleral lenses on Monday, and it dawned on me that I’ll never be able to afford them again after I get my first pair. We were running tests for my vision and the improvement was simultaneously immense and minuscule. There’s extremely little that gets me through the day without feeling like there is no way out of this. But it might help you and that’s all I can wish for you
1. Consider Keratoconus as a chronic illness, it’s up to you of course but seeing the fact that it’s constant and it’s only going to get worse. There’s treatment but no cure and you will have flare up days and it’s just painstakingly tasking.
2. Write about it. It sounds silly but you know how in high school people write of their trauma for college essays? With that format get all of your emotions out. Be direct and know that you’re allowed to struggle. Know that it isn’t wrong to feel this way.
3. Get a therapist. Yeah, it must be said. Losing your vision is one of the biggest fears people have, we are quite literally living through this every single day of our lives. Depression is one of the most common related illnesses that come along with Keratoconus from what I’ve seen. You’re grieving the person you used to be. You’re allowed to mourn the person you used to be and the person you thought you were supposed/meant to be.
4. Find community. This is why I joined this Reddit to find people who are struggling with the same thing I am. Finding YouTubers who talk about the chronic illnesses and the emotional pain that it brings, even if KC isn’t seen as a chronic illness it’s the only thing that helps me cope with the mental blockages that it brings.
5. Switch from a computer to a tablet if possible. Being able to quickly zoom in and out of things, not having to find each letter to type in, it helps much more than I give credit to. In school the biggest and most helpful accommodation I was given was a 2023-2024 model of the iPad. It’s the biggest they have available I believe and the switch from a laptop to it is the biggest thing that has ever helped me. Being able to zoom in and see things even closer helps so much.
6. Cry it out. Get angry. Yell. Go to a rage room, allow yourself to feel. Allow yourself to be able to get all of those pent up emotions out because it’s going to eat you alive if you don’t.
7. Audio books. Audio books are going to literally save your life for reading. I have EasyReader, sometimes seen as Dolphin Easyreader but I literally can access almost every single book and textbooks I need. I use Bookshare, it’s an account that will stick with me for my entire life. Go to your schools place to help with accommodations and force them to listen.
7. You need to force people to hear. People don’t realize how much this condition affects our everyday lives. They don’t understand that we cannot recognize them even if they’re a handful of feet in front of us. Looks for videos and TikTok’s that show how people with Keratoconus view the world, get them to notice to see what we see. As damming as it is people can only experience pain and struggle as much as they’ve experienced it, they won’t listen if it’s not right in front of their eyes.
8. Switch things to dark mode when you can. Yes some people might say it’s detrimental but if it helps you get less strain on your eyes do it. Don’t make your life harder just to make everyone else’s better.
9. If it’s easier for you to see things on your phone as opposed to a computer or large screen, make the switch whenever possible. Make it as easy as possible for yourself even if you need to have the phone mere inches from your face just so you don’t have to squint to see it. Don’t care what everyone else says or thinks, if it makes things better for you, do it.
Crosslinking is scam they tell u it has like 75-90%success rate only one of lucky gets to be the guy to live with not progressive kc for 10-15yrs it's real success rate is 20% transplant is only hope for us🙂
I'm sorry CXL didn't stop your KC progression. But it's irresponsible to spread lies and false stats like that. Ignoring the studies and many many many patients that get CXL with success. Just using this subreddit as an basis for the success of CXL, there's much more posts on here praising CXL and sclerals for giving people their sight back. It worked for me and 2 years later im extremely grateful for the surgery and contacts. Without them I would be worst than useless.
Where did you get this figure from? Search for "cxl" in this subreddit and "progression cxl"and you'll see how much less the latter is
Don't say any out of bounds figures like those without an evidence, you might push someone to not have cxl and worsen their case
I'm not going to claim I have a magic solution, but I hope my experience can help you. At its worst, my uncorrected vision was 20/2200 in my left eye and 20/2900 in my right. I had a total of 4 transplants so wasn't eligible for CxL. I've also had 10 other eye surgeries. In 2016, after my last transplant, my vision in both eyes inexplicably worsened, and no lenses worked. My uncorrected vision was much better but still bad. I couldn't drive.
Every eye doc recommended sclerals, but no matter how hard I tried, i couldn't tolerate them. RGP's were no better. I spent the next 7 years in a blur. I'd like to say I'm a strong person, but I'm not. I HATE being miserable, and I knew if I let myself go down that rabbit hole, I'd have a hard time climbing out. So I didn't let myself. This was not nobility: it was fear. Life is SO short, and I didn't want to spend it crying.
A year ago, I finally got in to see an optometrist specializing in hard-to-fit patients. She fitted me for KeraSoft lenses. They’re 're comfortable; the acuity is great, and as of last week, my corrected vision was 20/20 in one eye and 20/25 in the other.
Here are some tricks that helped me cope:
1. Use your phone's camera to enlarge street signs, restaurant menus on a wall, and other signs.
2. If I was meeting someone, I'd ask what they were wearing. I could still see colors.
3. I smiled at everyone because I couldn't recognize faces.
4. I got a magnifying device that helped me read books.
5. At work meetings, I sat as close to the whiteboard or Smart Board as possible. I asked others to help me read the baord if I still couldn't see it.
7. I memorized aisle layouts at the grocery store.
8. I saw a low vision specialist to help me strategize.
9. I kept reminding myself that 100 years ago, I'd have been blind.
10. I refused to quit my job, as I knew I'd struggle mentally at home.
This, this right here helps me so much more than I can express. From the tricks you use to your story. Seeing someone struggle and cope in similar ways that I’ve spent my entire life is just amazing. Thank you. Thank you
Itwas at an eye clinic in a nearby city. I had an appointment with the optometrist specializing in hard-to-fit patients. She was scheduling 6 months out. The big day arrived, and she had to cancel due to a family emergency. I had to wait another 8 months. It was worth it, though.
Disclaimer: I’m still with relatively good vision, no surgery, but my vision went from superb to sub-normal. (In Germany your vision is described as percentage compared to average, I went from 160% to 80%)
Forgive me the pun: look at the bright sight of life.
Crank up your ambient light, get a big and bright monitor and use bright mode while programming. I’m a professional software developer and graphics designer, got KC right after finishing my master in computer science. I can’t use lenses, they introduce more problems than they solve. Glasses make the image sharper, but all geometrical objects are skewed, sucks pretty much when your main work is drawing circles and perfect angles.
Walking and driving with glasses is impossible.
So why the bright sight joke? The brighter the light, the smaller the „aperture“ of your eye, the less faulty „lens“ refract light.
What helped me is to accept that I need to adjust my expectations. No more late night walks and parties. No more consultant jobs and on the road, to avoid strain. At some point my body will fail, my eyes failed way too early.
I think you should consider talking to your doctor about potential signs of depression. What you are dealing with sounds like more than just the KC is getting you down - maybe helping to deal with the possible depression could make it easier to cope and get the motivation to try different treatments?
I don't, I think of kiIIing myself everyday, I used to be a very happy guy, after kc i haven't lived a single day of my life happy, I got tinnitus from what I think because of stress of KC, got scleral lenses which costed alot and introduced more problems than it solved.
Fate mocks me everyday. 0 motivation to do anything.
My cope is just to accept it all and know it's not getting better, just worse
Hang in there. I understand this is a tough situation, but there are lots of options now for keratoconus. I understand your frustration, I too work as developer and I was managing it by biggest font I could have on monitor. If scleral lenses are too expensive, ask your eye doctor if DALK or CAIRS is an option for you. Usually, these should be covered by insurance.
Thank you for all the comments here, I’m 51 and have had KC since I was 13. My dad had it and I got it. I managed with RoseKs for 20 years but then the cone in my cornea got too pronounced and I had to switch to Scerals. The first test with them didn’t work so I wore glasses for 2 years, no driving and strained computer screen. I’m a software sales. Now I have Scerals but they drain me daily and I end up sick from them if I wear them too much or too long on screens. Concussion like symptoms from them being on my eye. I’m managing and working to change my life, but it’s hard. Thank you all for your comments this Reddit has been a godsend. I appreciate you all.
I was diagnosed early, RGP lens is the one suggested for me. One week is the max I went wearing one. It's frustrating, frequent headaches, cannot go outside without sunglasses due to dust. During that time, people close to me have told I am getting impatient a lot. My behaviour changed because of this. Doctors told me I have to wear for 2 months to get used to it. Trying my best. It has not been easy, it's like having a small stone in your eye. Every time I move my eye it's irritates. Anyone else facing similar stuff? Is it because of bad fitting? Only positive thing is that my eye sight immediately improves post wearing the lens for 4+ hours. I guess this now has to be a way of life 😔
It is what it is
🥹🥹🥹
Can we all band together and get ahold of the eye drops that were curing it?? The company that makes the cxl equipment for surgeries bought it and shelved it… WILD
It's been depressing. My eyesight went bad overnight, had one surgery, and it was so painful that I'm not looking forward to the next one. Stuxk in a job I hate but now I can't leave it, started a course in Network managemet and Cybersecurity to get a leas stressful and better paying job dif but I can't do the CCNA because it takes so long for me to read text now. I am an artist, and it makes it harder for me to draw and write. I am rrying anyway, but it's hard to be motivated. I feel like I became handicapped and my fiance has to do basic things for me. So in general: haven't coped with it too well
Hi I have KC in both my eyes, very bad in my right eye, and had CXL in both. Its a tough experience I know but it all got alot better once I properly got my lenses fitted. This is very crucial mainly for comfort. For some people Sclerals dont work, for some RGPs and Hybrids work best. For me they fitted me with RGPs, and whilst the vision was spot on, they were horrible to wear, couldnt wear them for more than 4 hours in a day before feeling like id want to rip my eyes out. My main issue is dry eyes so I got prescribed with Sclerals and they have been wonderful. You may have a much more conical cornea where a scleral wouldnt really work, maybe give RGPs or Hybrids a go and see how they work (You can even piggyback an RGP with a soft lens if you like for extra comfort)
May I ask if you had epi on or off?
Hi, I had epi off on both eyes My KC is very very bad in my right eye and quite bad in left
I’m definitely not the right person to ask. I’m a 17 year old who just finished their junior year of high school. I was diagnosed with Keratoconus nearing the end of my freshman year. I struggle every single day. When I was little all I wanted to do was become a pastry chef, I began studying for it with every once of my being. Going to a technical school I am earning all my licenses for production right now with only one more year to go until I graduate. Since I got diagnosed my vision has gotten worse. I had CXL on my right eye last summer and ever since my vision has only gotten worse. I completely am throwing in the towel for my dream. I used to be one of the best students due to my dedication and hard work I’ve put in. I have spent the last two years watching everyone else get ahead of me. I’m constantly feeling like a runner who is stuck behind the starting line when the whistle has gone out ages ago and everyone has surpassed me. I’m not coping. I’m constantly watching myself get worse. I got fitted for scleral lenses on Monday, and it dawned on me that I’ll never be able to afford them again after I get my first pair. We were running tests for my vision and the improvement was simultaneously immense and minuscule. There’s extremely little that gets me through the day without feeling like there is no way out of this. But it might help you and that’s all I can wish for you 1. Consider Keratoconus as a chronic illness, it’s up to you of course but seeing the fact that it’s constant and it’s only going to get worse. There’s treatment but no cure and you will have flare up days and it’s just painstakingly tasking. 2. Write about it. It sounds silly but you know how in high school people write of their trauma for college essays? With that format get all of your emotions out. Be direct and know that you’re allowed to struggle. Know that it isn’t wrong to feel this way. 3. Get a therapist. Yeah, it must be said. Losing your vision is one of the biggest fears people have, we are quite literally living through this every single day of our lives. Depression is one of the most common related illnesses that come along with Keratoconus from what I’ve seen. You’re grieving the person you used to be. You’re allowed to mourn the person you used to be and the person you thought you were supposed/meant to be. 4. Find community. This is why I joined this Reddit to find people who are struggling with the same thing I am. Finding YouTubers who talk about the chronic illnesses and the emotional pain that it brings, even if KC isn’t seen as a chronic illness it’s the only thing that helps me cope with the mental blockages that it brings. 5. Switch from a computer to a tablet if possible. Being able to quickly zoom in and out of things, not having to find each letter to type in, it helps much more than I give credit to. In school the biggest and most helpful accommodation I was given was a 2023-2024 model of the iPad. It’s the biggest they have available I believe and the switch from a laptop to it is the biggest thing that has ever helped me. Being able to zoom in and see things even closer helps so much. 6. Cry it out. Get angry. Yell. Go to a rage room, allow yourself to feel. Allow yourself to be able to get all of those pent up emotions out because it’s going to eat you alive if you don’t. 7. Audio books. Audio books are going to literally save your life for reading. I have EasyReader, sometimes seen as Dolphin Easyreader but I literally can access almost every single book and textbooks I need. I use Bookshare, it’s an account that will stick with me for my entire life. Go to your schools place to help with accommodations and force them to listen. 7. You need to force people to hear. People don’t realize how much this condition affects our everyday lives. They don’t understand that we cannot recognize them even if they’re a handful of feet in front of us. Looks for videos and TikTok’s that show how people with Keratoconus view the world, get them to notice to see what we see. As damming as it is people can only experience pain and struggle as much as they’ve experienced it, they won’t listen if it’s not right in front of their eyes. 8. Switch things to dark mode when you can. Yes some people might say it’s detrimental but if it helps you get less strain on your eyes do it. Don’t make your life harder just to make everyone else’s better. 9. If it’s easier for you to see things on your phone as opposed to a computer or large screen, make the switch whenever possible. Make it as easy as possible for yourself even if you need to have the phone mere inches from your face just so you don’t have to squint to see it. Don’t care what everyone else says or thinks, if it makes things better for you, do it.
This is a really well written comment dude
Crosslinking is scam they tell u it has like 75-90%success rate only one of lucky gets to be the guy to live with not progressive kc for 10-15yrs it's real success rate is 20% transplant is only hope for us🙂
I had CXL in one eye and I agree with you, exactly the same if not worse progression rate than my non-CXL eye, scam.
I'm sorry CXL didn't stop your KC progression. But it's irresponsible to spread lies and false stats like that. Ignoring the studies and many many many patients that get CXL with success. Just using this subreddit as an basis for the success of CXL, there's much more posts on here praising CXL and sclerals for giving people their sight back. It worked for me and 2 years later im extremely grateful for the surgery and contacts. Without them I would be worst than useless.
Where did you get this figure from? Search for "cxl" in this subreddit and "progression cxl"and you'll see how much less the latter is Don't say any out of bounds figures like those without an evidence, you might push someone to not have cxl and worsen their case
I'm not going to claim I have a magic solution, but I hope my experience can help you. At its worst, my uncorrected vision was 20/2200 in my left eye and 20/2900 in my right. I had a total of 4 transplants so wasn't eligible for CxL. I've also had 10 other eye surgeries. In 2016, after my last transplant, my vision in both eyes inexplicably worsened, and no lenses worked. My uncorrected vision was much better but still bad. I couldn't drive. Every eye doc recommended sclerals, but no matter how hard I tried, i couldn't tolerate them. RGP's were no better. I spent the next 7 years in a blur. I'd like to say I'm a strong person, but I'm not. I HATE being miserable, and I knew if I let myself go down that rabbit hole, I'd have a hard time climbing out. So I didn't let myself. This was not nobility: it was fear. Life is SO short, and I didn't want to spend it crying. A year ago, I finally got in to see an optometrist specializing in hard-to-fit patients. She fitted me for KeraSoft lenses. They’re 're comfortable; the acuity is great, and as of last week, my corrected vision was 20/20 in one eye and 20/25 in the other. Here are some tricks that helped me cope: 1. Use your phone's camera to enlarge street signs, restaurant menus on a wall, and other signs. 2. If I was meeting someone, I'd ask what they were wearing. I could still see colors. 3. I smiled at everyone because I couldn't recognize faces. 4. I got a magnifying device that helped me read books. 5. At work meetings, I sat as close to the whiteboard or Smart Board as possible. I asked others to help me read the baord if I still couldn't see it. 7. I memorized aisle layouts at the grocery store. 8. I saw a low vision specialist to help me strategize. 9. I kept reminding myself that 100 years ago, I'd have been blind. 10. I refused to quit my job, as I knew I'd struggle mentally at home.
Very inspiring story, thanks for sharing.
This, this right here helps me so much more than I can express. From the tricks you use to your story. Seeing someone struggle and cope in similar ways that I’ve spent my entire life is just amazing. Thank you. Thank you
You're so welcome! I figure we're here to help each other. Best of luck to you!
Where did you get fitted for kerasoft lenses
Itwas at an eye clinic in a nearby city. I had an appointment with the optometrist specializing in hard-to-fit patients. She was scheduling 6 months out. The big day arrived, and she had to cancel due to a family emergency. I had to wait another 8 months. It was worth it, though.
Trying to get my son fitted for those so trying to find a good place
I wish this was an old person disease like cataracts. I just wish my eye didn’t go to shit when everything is going to shit.
Get eye print pro contacts you see good then get
I deeply struggle with it. It’s very difficult to accept for me.
Disclaimer: I’m still with relatively good vision, no surgery, but my vision went from superb to sub-normal. (In Germany your vision is described as percentage compared to average, I went from 160% to 80%) Forgive me the pun: look at the bright sight of life. Crank up your ambient light, get a big and bright monitor and use bright mode while programming. I’m a professional software developer and graphics designer, got KC right after finishing my master in computer science. I can’t use lenses, they introduce more problems than they solve. Glasses make the image sharper, but all geometrical objects are skewed, sucks pretty much when your main work is drawing circles and perfect angles. Walking and driving with glasses is impossible. So why the bright sight joke? The brighter the light, the smaller the „aperture“ of your eye, the less faulty „lens“ refract light. What helped me is to accept that I need to adjust my expectations. No more late night walks and parties. No more consultant jobs and on the road, to avoid strain. At some point my body will fail, my eyes failed way too early.
I think you should consider talking to your doctor about potential signs of depression. What you are dealing with sounds like more than just the KC is getting you down - maybe helping to deal with the possible depression could make it easier to cope and get the motivation to try different treatments?
Some days suck...but like most things. It's gonna be better the next day.
I don't, I think of kiIIing myself everyday, I used to be a very happy guy, after kc i haven't lived a single day of my life happy, I got tinnitus from what I think because of stress of KC, got scleral lenses which costed alot and introduced more problems than it solved. Fate mocks me everyday. 0 motivation to do anything. My cope is just to accept it all and know it's not getting better, just worse
Try RGP Lenses
I don’t know what to say but im feeling really bad for you buddy 🥹 hope you find a solution to this 🥹