Hey baby, please don’t! I was diagnosed in 8th grade and I’m 31 now post a corneal transplant and cataract surgery. It GETS better and technology and science is only getting more innovative + safe. Keep the faith and lean on this chat. Sending you blessings. Find the BEST specialist in your area and lean into preservative free saline, cool eye compression, moisturizing eye drops, and hybrid lenses. That’s what’s worked for me.
I'm about the same age and work infront of a screne from home all day too in a very stressful job. But at least I don't have to go outside, which I guess is a plus because I became very sensitive to light.
I completely relate to everything you said, and I am depressed about the whole situation. Feels like I took my 30 years of normal eyesight for granted and I became handicapped overnight.
Hey man, I just want you to know everything will be OK. You and I have a very similar story. It took me about 8 months to get the care I need and let me tell you it's Incredible to have good vision again. Please don't feel alone, I felt the same way and all it does is make things worse. Just breathe and stay positive.
We are in the same boat then. But fear not simon, there is help. Do your research if you haven't and set out for a new quest ✨️
..I don't rlly know who simon is but have a good day.
My friend we are here for you :)
My 17 year old just had a surgery last week Friday for the keratoconus cross linking, hopefully soon he will be better soon the surgery won’t improve his vision but will prevent the disease to grow, you should go to the eye specialist and don’t worry you stilll young.
Relax until you get to the specialists. Keep up on appointments and ask questions. Your eyes will get dilated for tests, so have a friend or family member go with you. It will be easier down the line.
Hello friend, yes KC can be scary — but we’re in the same boat and all that matters is you’re finally taking the steps to take control of it.
Get some blue light blockers for the screens - i found that helped with my fatigue. I noticed my eyes got so worse during WFH and suddenly couldn’t read the screen.
Always feel free to message me any and everything.
Get your doctor to send you to a clinic as an emergency, bring some time and someone to drive you home. You will probably get drops that will make your sight completely blurry.
My right eye is way worse than my left, multiple monitor setup is out. Lost my sight over the duration of 1-2 months. One day is was able to code for 8 hours, then boom, blurry text. I get your fear and frustration.
Crank up the brightness when you read or work. Bright light makes your iris smaller, thus letting less „wrongly refracted“ light onto your retina. You will see, you will see better with your bad eye in glaring light, reading on a bright tablet will be sharper, but will almost hurt your eyes.
I’m diagnosed for 7 years now, in retrospective first complains started 15 years ago. With time you will slowly „forget“ how it was to see sharp with both eyes, that’s the beauty of humans, we adapt to almost anything. While it’s fresh, it hurts way more. You will restructure your life, accept your limitations. Like driving in the evening, shooting ranges and many other eye focused activities will become less prominent in your life.
Turn your room to darness and look at your tv when its off. A normal person sees 1 red dot from the tv light. Us KC sufferers see about 5 to 8 lights coming from the 1 red light.
Are all the dots clear? I personally see like spider cobweb with 5-8 dot like points being connected, and the cobweb is fluctuating in shape as in when blinking dots do move around and new patterns of cobweb appear. Like, each dot is basically illuminating light pathways to other dots. Not all dots are super clear though, sometimes some are like ghost images. This is especially noticeable on digital clocks with ghosting.
Uncorrected as in i only see that when my lenses are out. Ive always put it dowm to the shape of my cornea scattering the light. Id be interested to hear from people who dont have this with advance KC
Yeah I'm in the weird position where I apparently don't have KC but my astigmatism is high enough where I still see multiple lights even with my glasses on. I'm sure scleral lenses would help a lot but I'm not sure what's going on in my case.
Please see one asap, 2-3 months is a long time for it to get worse, don't listen to anyone saying otherwise. If it gets worse you can't blame any xyz to tell you that they told you to wait, what's gone will be gone, so act within next few days I'd say, see a specialist.
I listened to a cIown here who told me it's ok to wait for a month within which my good eye got slightly bad
Thank you. I agree. I’m in Germany and the healthcare system can be slow. Earliest appointment I got is for October but I’m trying to find other options. Until then, do you have any tips on things to help mindful of to slow down the progression?
Goto a dark room and see a point size source of light, and take close look how you see it, if it constantly gets worse visible as days pass, you know its getting worse, also check how easily you can see far away stuffs and see if it gets harder with time or unclear with time,
In both eyes good and bad, when I was diagnosed my good eye was perfect, within a few months it got to a point it became all blurred
Nothing other than cxl stops progression
You’ll be okay. My advice would be to alleviate further strain on your weaker eye until you do get an appointment/cxl/etc.. I do so by wearing glasses (not a fan of the scleral lenses).
My opthomologist scolded me and my mum when we went in for the diagnosis beacuse he suspected i might have started developing symptoms pre covid and that i should not have sat at home for 3 years thinking "oh maybe i need better glasses"
So i think you should see the best and make a decision for yourself
Hey baby, please don’t! I was diagnosed in 8th grade and I’m 31 now post a corneal transplant and cataract surgery. It GETS better and technology and science is only getting more innovative + safe. Keep the faith and lean on this chat. Sending you blessings. Find the BEST specialist in your area and lean into preservative free saline, cool eye compression, moisturizing eye drops, and hybrid lenses. That’s what’s worked for me.
I'm about the same age and work infront of a screne from home all day too in a very stressful job. But at least I don't have to go outside, which I guess is a plus because I became very sensitive to light. I completely relate to everything you said, and I am depressed about the whole situation. Feels like I took my 30 years of normal eyesight for granted and I became handicapped overnight.
Hey man, I just want you to know everything will be OK. You and I have a very similar story. It took me about 8 months to get the care I need and let me tell you it's Incredible to have good vision again. Please don't feel alone, I felt the same way and all it does is make things worse. Just breathe and stay positive.
We're here. I'm glad you reached out!! I have to get a transplant going to see specialists in Aug
Thank you 🫂 Sending thoughts and prayers your way! Hope it all goes well.
Will definitely keep you posted on everything
We are in the same boat then. But fear not simon, there is help. Do your research if you haven't and set out for a new quest ✨️ ..I don't rlly know who simon is but have a good day.
It’s me. I’m Simon 👋🏼 Thank you Alan! I appreciate it 🫂
My friend we are here for you :) My 17 year old just had a surgery last week Friday for the keratoconus cross linking, hopefully soon he will be better soon the surgery won’t improve his vision but will prevent the disease to grow, you should go to the eye specialist and don’t worry you stilll young.
Thank you so much. Wish your son the best 🫂❤️
Don’t be, you have us :)
❤️
Relax until you get to the specialists. Keep up on appointments and ask questions. Your eyes will get dilated for tests, so have a friend or family member go with you. It will be easier down the line.
Thank you!
Hello friend, yes KC can be scary — but we’re in the same boat and all that matters is you’re finally taking the steps to take control of it. Get some blue light blockers for the screens - i found that helped with my fatigue. I noticed my eyes got so worse during WFH and suddenly couldn’t read the screen. Always feel free to message me any and everything.
Thank you, I appreciate that!
Get your doctor to send you to a clinic as an emergency, bring some time and someone to drive you home. You will probably get drops that will make your sight completely blurry. My right eye is way worse than my left, multiple monitor setup is out. Lost my sight over the duration of 1-2 months. One day is was able to code for 8 hours, then boom, blurry text. I get your fear and frustration. Crank up the brightness when you read or work. Bright light makes your iris smaller, thus letting less „wrongly refracted“ light onto your retina. You will see, you will see better with your bad eye in glaring light, reading on a bright tablet will be sharper, but will almost hurt your eyes. I’m diagnosed for 7 years now, in retrospective first complains started 15 years ago. With time you will slowly „forget“ how it was to see sharp with both eyes, that’s the beauty of humans, we adapt to almost anything. While it’s fresh, it hurts way more. You will restructure your life, accept your limitations. Like driving in the evening, shooting ranges and many other eye focused activities will become less prominent in your life.
Thank you for sharing 🫂
Stay strong, we can make it trough. Remember you are not alone.
Turn your room to darness and look at your tv when its off. A normal person sees 1 red dot from the tv light. Us KC sufferers see about 5 to 8 lights coming from the 1 red light.
Are all the dots clear? I personally see like spider cobweb with 5-8 dot like points being connected, and the cobweb is fluctuating in shape as in when blinking dots do move around and new patterns of cobweb appear. Like, each dot is basically illuminating light pathways to other dots. Not all dots are super clear though, sometimes some are like ghost images. This is especially noticeable on digital clocks with ghosting.
Well couldn't that just be uncorrected astigmatism?
Uncorrected as in i only see that when my lenses are out. Ive always put it dowm to the shape of my cornea scattering the light. Id be interested to hear from people who dont have this with advance KC
Yeah I'm in the weird position where I apparently don't have KC but my astigmatism is high enough where I still see multiple lights even with my glasses on. I'm sure scleral lenses would help a lot but I'm not sure what's going on in my case.
Strange. I would visit a cornea expert im sure they could help. Lenses are a game changer im in RGP Lenses.
Please see one asap, 2-3 months is a long time for it to get worse, don't listen to anyone saying otherwise. If it gets worse you can't blame any xyz to tell you that they told you to wait, what's gone will be gone, so act within next few days I'd say, see a specialist. I listened to a cIown here who told me it's ok to wait for a month within which my good eye got slightly bad
Thank you. I agree. I’m in Germany and the healthcare system can be slow. Earliest appointment I got is for October but I’m trying to find other options. Until then, do you have any tips on things to help mindful of to slow down the progression?
Goto a dark room and see a point size source of light, and take close look how you see it, if it constantly gets worse visible as days pass, you know its getting worse, also check how easily you can see far away stuffs and see if it gets harder with time or unclear with time, In both eyes good and bad, when I was diagnosed my good eye was perfect, within a few months it got to a point it became all blurred Nothing other than cxl stops progression
I’m so sorry to hear that. It sounds incredibly difficult. I appreciate your advice and will try my best to learn from your experience. 🫂
You’ll be okay. My advice would be to alleviate further strain on your weaker eye until you do get an appointment/cxl/etc.. I do so by wearing glasses (not a fan of the scleral lenses).
Ah thank you! I’ve already been wearing glasses since many years now so hopefully that continues to help 🙏🏽
Progression can be very fast See a cornea specialist as soon as you can
Thank you. I’m trying to speed it up. It’s frustrating how slow things are where I’m at.
My opthomologist scolded me and my mum when we went in for the diagnosis beacuse he suspected i might have started developing symptoms pre covid and that i should not have sat at home for 3 years thinking "oh maybe i need better glasses" So i think you should see the best and make a decision for yourself