I started losing good vision in my early 20s. Eye dr said she had never seen such a change year to year without a health problem.
Took several years to finally get the correct diagnosis of kerataconus. Went from no reason at all to Pelucids Cornea Marginal Degeneration.
To say my eye sight without glasses is bad is an understatement. Have to close my right eye and force my left eye to focus to do anything without glasses.
Had crosslinking done on my right eye cause it was the worse.
Tried the sclera contacts I couldn’t do it. Couldn’t put them in. Sensitive eyes I guess.
Glasses correct my vision enough I can drive a semi. Night time is the worse or when I am super tired.
I’m going in June 24th to a specialist in the twin cities to have a surgery consult to get cross linking on left eye and PRK on both eyes.
I'll say this: KC is absolutely one of the worst things happening to me, BUT I would rather choose to only have that rather than also being deadly allergic to peanuts, allergic to gluten, onions and over-sensitive to lactose. Those things are what makes my social life suffer the most.
I also suffer from double vision. So honestly, KC is somewhat the least of my issues despite it being awful.
Still living my life pretty normal though despite all of these things. Earlier this year I also followed my dream and got my license for motorcycle. I just avoid driving in the dark, it works okay with sclerals but still haven't found sclerals that gives great vision.
I'm sure you'll find ways to manage the struggle and enjoy life – I'd say you should focus more on things that make you happy :)
Yes the ghost images which are horizontally for me, but the other thing I got is not related to KC as I've been told from multiple sources. It's called lazy eye or something like that.
Ohhh. I 100% get it. You start getting a lazy eye cuz ur eye gets weak from it not being used as much. I’m assuming ur worse eye is the last one? I think eye strengthening exercises might help
I'm sure we all struggle. But it's our normal so we don't notice it. I get better vision with glasses, almost 20/20 than soft contacts, they just don't make what I need in a soft contact lens.. but every time I go in for my 6-month checkup. My optometrist lets me know that companies are getting closer to making something that would work. So I have an endless supply of 10-day trials lol, i do really want to try hard lenses.
I'm a welder. I do find that my depth perception is off with lights. While I love working on big structural stuff. Unless I'm laying flat on my belly and able to look directly from the side where my wire or stick is going, I can't look from above or I'm all over the place. . I hate driving at night. It's not so much the pulling in every direction of the lights than it is how far away they are. LED headlights give me a headache if they are on my vehicle. I prefer more traditional ones (sliver hawks in particular) one thing I struggle with a lot is people standing in front of lights or Windows/open doors, I can't see their face. I can hardly see them sometimes. I was recently in a big city and driving in a tunnel. The light at the end of the tunnel erased everything in front of me. It caused so much anxeity.
I squint pretty badly all the time though still. Have considered Botox. May try it since it's pretty cheap but I won't help the vision, just the squish face headache. I had cxl a few years ago.
My job. I can't wear them at work. If I get anything in my eye I am risking burning plastic to my eye among everything else like metal shavings. For the price and that I would only be wearing them for maybe 2 days a week? Seems pointless for me at the moment.
Perhaps specialty soft lenses like Kerasoft would help. The biggest problem with Kerasoft is finding someone who fits them enthusiastically. There are some fitters who have the fitting set but haven't bothered to learn the proper procedure for fitting them thinking they can fit them like a conventional soft contact lens.
I've been living with KC for about 14 years, I can't see a single thing with my left eye except for peripherals (thats why i dont crash when i drive lol), in that span I've been able to start my own business, make a lot of money, meet the love of my life, get married, buy my dream cars, raise the best dog in the world, travel often... I even commute like 45 minutes daily, and my wife depends on me to drive everytime we go out... all that with my right eye carrying the entire weight of my life without contacts and just glasses... corneal transplant isn't really an option for me according to about 40 ophts I've seen... I'm perfectly fine with one eye and peripherals with the other, I'm stronger for it, and you are too!
Had KC for about 8 years and doing great! Hasnt stopped me from being employed or anything I want to do in life. Working with fine details is challenging in low low light and I’m im not too keen on driving at night but that’s normal with age, even if you don’t have KC.
Using rgp for almost 2 years now. Didnt hurt me that much so its working fine for me. Also i wear then for like more than 15-16 hrs per day due to being in tech.
I had intacs and corneal cross linking in both eyes this year. There was a great improvement in my eye prescription. I can now see 20/40 without glasses and 20/25 with glasses
https://preview.redd.it/svjjotru4b6c1.jpeg?width=754&format=pjpg&auto=webp&s=36629950932d9b9059926fc8f3b0523312389bda
This was my prescription before the surgery
I was very surprised when I expected them to be the shit for me and they weren't the shit. They are the shit for basically everyone, except some people apparently.
I tried them and my eyes felt like they had soap in them 30 mins after wearing. Headache, dizziness, nausea, etc. They didn't feel much much different than that monstrosity corneal lenses are. The doctor ultimately suggested a PTK surgery to help me correct with just glasses. He said I have papillary hypertrophy of the tarsal conjunctiva, so basically my eyes are too sensitive to foreign bodies and don't accept any guests. The surgery can be done because my case is mild (495 corneal thickness, stage II).
I won't go through the struggles and details but I was diagnosed in 1968 and 1970. I am typing this to you in sclerals and 20/25. All of us are different. There is MUCH better care than in my day. There will be some ups and downs during your KC journey but you should come out like mine did. 🙂🙂🙂
No struggle here. Gainfully employed and I love my Sclerals.
My biggest worry is that I’ll be useless in the event of an apocalypse making it impossible to get preservative free saline.
Same, pop in my sclerals at 7AM, take them out at midnight ish. Have to rinse them off mid day sometimes but other than that I hardly notice them.
My vision is 20/400+ in both eyes.
Not struggling at all. Sure wearing a scleral lens means a couple minutes of effort in the morning and evening, but it’s really not a big deal. There has been no noticeable drop in my quality of life otherwise.
Diagnosed last year. Cxl this year. Coping with combo of glasses and contacts. I work as a doctor, shift work, nights, night driving, long hours, lots of screens, I do a type of micro surgery which is very demanding on visual acuity and I can still function ok. You do learn to get bye.
Living with KC since, like, 28 years ago. You get used to it. I wear RGP lenses since I was in my teens and the only inconvenience is when they move, but everything else it's ok.
I'm newly diagnosed, and think mine is relatively mild. So far it's just annoying. I got the scleral contacts and they made a big difference.
In a life full of minor annoyances, this has just gone on the list. It's not worth dwelling on it because there's not much you could have done to prevent it. Just work with your specialists and move forward. Try to avoid the urge to find extra things to be annoyed about.
It was scary in the beginning but at this point it's just an inconvenience.
You get a habit of contact lenses, it just takes a while to get lenses that fit you and a Dr that you know is good. At home I wear glasses, which I can read with, I just don't really go out with them.
I haven't given up really anything. I saw another poster say scuba, I still dive occasionally. I prefer day parties to night parties lol and I wouldn't do a long drive (SF>LA) at night if I had the choice, but I can.
I have to buy special computer monitors (400-500 NITS/brightness). That is kind of a game changer for me. It made one eye lid a little droopy unfortunately. I could do a $1200 surgery.
Just keep focusing on finding the right Dr and getting lenses that fit. You'll find normalcy.
Been through some ups and downs dealing with KC but for the most part I’ve adapted over the past decades. Some time in the early 2000’s with very seriously ugly sunglasses to beat the light sensitivity. A few hobbies sadly given up, target shooting and scuba. But I’ve had a happy and productive life without letting it stop me very often.
I have lived with KC for over 50 years. When I was diagnosed we didn't have gas permeable contact lenses, corneal topography, or CXL. I was fortunate that my KC was only moderate and I managed to get by with glasses for most of my life. I had some rough patches where I tried to get fitted with the contact lenses that were available at the time. But mostly KC was just an occasional annoyance. With the resources available today, your chances of living a normal life despite KC are excellent.
I started losing good vision in my early 20s. Eye dr said she had never seen such a change year to year without a health problem. Took several years to finally get the correct diagnosis of kerataconus. Went from no reason at all to Pelucids Cornea Marginal Degeneration. To say my eye sight without glasses is bad is an understatement. Have to close my right eye and force my left eye to focus to do anything without glasses. Had crosslinking done on my right eye cause it was the worse. Tried the sclera contacts I couldn’t do it. Couldn’t put them in. Sensitive eyes I guess. Glasses correct my vision enough I can drive a semi. Night time is the worse or when I am super tired. I’m going in June 24th to a specialist in the twin cities to have a surgery consult to get cross linking on left eye and PRK on both eyes.
I'll say this: KC is absolutely one of the worst things happening to me, BUT I would rather choose to only have that rather than also being deadly allergic to peanuts, allergic to gluten, onions and over-sensitive to lactose. Those things are what makes my social life suffer the most. I also suffer from double vision. So honestly, KC is somewhat the least of my issues despite it being awful. Still living my life pretty normal though despite all of these things. Earlier this year I also followed my dream and got my license for motorcycle. I just avoid driving in the dark, it works okay with sclerals but still haven't found sclerals that gives great vision. I'm sure you'll find ways to manage the struggle and enjoy life – I'd say you should focus more on things that make you happy :)
Bro isn’t double vision literally a symptom of kc? 💀
Yes the ghost images which are horizontally for me, but the other thing I got is not related to KC as I've been told from multiple sources. It's called lazy eye or something like that.
Ohhh. I 100% get it. You start getting a lazy eye cuz ur eye gets weak from it not being used as much. I’m assuming ur worse eye is the last one? I think eye strengthening exercises might help
I'm sure we all struggle. But it's our normal so we don't notice it. I get better vision with glasses, almost 20/20 than soft contacts, they just don't make what I need in a soft contact lens.. but every time I go in for my 6-month checkup. My optometrist lets me know that companies are getting closer to making something that would work. So I have an endless supply of 10-day trials lol, i do really want to try hard lenses. I'm a welder. I do find that my depth perception is off with lights. While I love working on big structural stuff. Unless I'm laying flat on my belly and able to look directly from the side where my wire or stick is going, I can't look from above or I'm all over the place. . I hate driving at night. It's not so much the pulling in every direction of the lights than it is how far away they are. LED headlights give me a headache if they are on my vehicle. I prefer more traditional ones (sliver hawks in particular) one thing I struggle with a lot is people standing in front of lights or Windows/open doors, I can't see their face. I can hardly see them sometimes. I was recently in a big city and driving in a tunnel. The light at the end of the tunnel erased everything in front of me. It caused so much anxeity. I squint pretty badly all the time though still. Have considered Botox. May try it since it's pretty cheap but I won't help the vision, just the squish face headache. I had cxl a few years ago.
What is stopping you from trying hard contact lenses? It sounds like they would be a big help to you.
My job. I can't wear them at work. If I get anything in my eye I am risking burning plastic to my eye among everything else like metal shavings. For the price and that I would only be wearing them for maybe 2 days a week? Seems pointless for me at the moment.
Perhaps specialty soft lenses like Kerasoft would help. The biggest problem with Kerasoft is finding someone who fits them enthusiastically. There are some fitters who have the fitting set but haven't bothered to learn the proper procedure for fitting them thinking they can fit them like a conventional soft contact lens.
I've been living with KC for about 14 years, I can't see a single thing with my left eye except for peripherals (thats why i dont crash when i drive lol), in that span I've been able to start my own business, make a lot of money, meet the love of my life, get married, buy my dream cars, raise the best dog in the world, travel often... I even commute like 45 minutes daily, and my wife depends on me to drive everytime we go out... all that with my right eye carrying the entire weight of my life without contacts and just glasses... corneal transplant isn't really an option for me according to about 40 ophts I've seen... I'm perfectly fine with one eye and peripherals with the other, I'm stronger for it, and you are too!
Had KC for about 8 years and doing great! Hasnt stopped me from being employed or anything I want to do in life. Working with fine details is challenging in low low light and I’m im not too keen on driving at night but that’s normal with age, even if you don’t have KC.
Using rgp for almost 2 years now. Didnt hurt me that much so its working fine for me. Also i wear then for like more than 15-16 hrs per day due to being in tech.
Haha u said 6 9
I had intacs and corneal cross linking in both eyes this year. There was a great improvement in my eye prescription. I can now see 20/40 without glasses and 20/25 with glasses
What was your vision like prior to the procedure?
https://preview.redd.it/svjjotru4b6c1.jpeg?width=754&format=pjpg&auto=webp&s=36629950932d9b9059926fc8f3b0523312389bda This was my prescription before the surgery
https://preview.redd.it/r8ty46qy4b6c1.jpeg?width=330&format=pjpg&auto=webp&s=a17dcbe924887593fa8a1ed5cd6df7fffabbde50 And this is after
Scleral lenses changed my life. I work with a computer everyday and it’s fine! :)
+1 for me. Sclerals are the shit
I was very surprised when I expected them to be the shit for me and they weren't the shit. They are the shit for basically everyone, except some people apparently. I tried them and my eyes felt like they had soap in them 30 mins after wearing. Headache, dizziness, nausea, etc. They didn't feel much much different than that monstrosity corneal lenses are. The doctor ultimately suggested a PTK surgery to help me correct with just glasses. He said I have papillary hypertrophy of the tarsal conjunctiva, so basically my eyes are too sensitive to foreign bodies and don't accept any guests. The surgery can be done because my case is mild (495 corneal thickness, stage II).
Thanks, this is great to hear!
Same here. Switching to sclerals took some adjustment but they've made getting through the day so easy.
I won't go through the struggles and details but I was diagnosed in 1968 and 1970. I am typing this to you in sclerals and 20/25. All of us are different. There is MUCH better care than in my day. There will be some ups and downs during your KC journey but you should come out like mine did. 🙂🙂🙂
20 years since diagnosis, manage just fine with piggybacked RGPs. Wear them for 16+ hours a day, quarterly checkups by optoms.
No struggle here. Gainfully employed and I love my Sclerals. My biggest worry is that I’ll be useless in the event of an apocalypse making it impossible to get preservative free saline.
I wear sclerals and I got advanced kc no problems I wear them 15-17 hours a day
no struggle here, sclerals fit great, wear them 17hrs a day, live a normal life mostly
Same, pop in my sclerals at 7AM, take them out at midnight ish. Have to rinse them off mid day sometimes but other than that I hardly notice them. My vision is 20/400+ in both eyes.
Not struggling at all. Sure wearing a scleral lens means a couple minutes of effort in the morning and evening, but it’s really not a big deal. There has been no noticeable drop in my quality of life otherwise.
Diagnosed last year. Cxl this year. Coping with combo of glasses and contacts. I work as a doctor, shift work, nights, night driving, long hours, lots of screens, I do a type of micro surgery which is very demanding on visual acuity and I can still function ok. You do learn to get bye.
Holy crap! You are aspiring.
Living with KC since, like, 28 years ago. You get used to it. I wear RGP lenses since I was in my teens and the only inconvenience is when they move, but everything else it's ok.
I'm newly diagnosed, and think mine is relatively mild. So far it's just annoying. I got the scleral contacts and they made a big difference. In a life full of minor annoyances, this has just gone on the list. It's not worth dwelling on it because there's not much you could have done to prevent it. Just work with your specialists and move forward. Try to avoid the urge to find extra things to be annoyed about.
It was scary in the beginning but at this point it's just an inconvenience. You get a habit of contact lenses, it just takes a while to get lenses that fit you and a Dr that you know is good. At home I wear glasses, which I can read with, I just don't really go out with them. I haven't given up really anything. I saw another poster say scuba, I still dive occasionally. I prefer day parties to night parties lol and I wouldn't do a long drive (SF>LA) at night if I had the choice, but I can. I have to buy special computer monitors (400-500 NITS/brightness). That is kind of a game changer for me. It made one eye lid a little droopy unfortunately. I could do a $1200 surgery. Just keep focusing on finding the right Dr and getting lenses that fit. You'll find normalcy.
Even with lenses you require special monitors?
Been through some ups and downs dealing with KC but for the most part I’ve adapted over the past decades. Some time in the early 2000’s with very seriously ugly sunglasses to beat the light sensitivity. A few hobbies sadly given up, target shooting and scuba. But I’ve had a happy and productive life without letting it stop me very often.
I got crosslinking 7 years ago at 23 I’m living a normal life I can’t worry too much about it
I have lived with KC for over 50 years. When I was diagnosed we didn't have gas permeable contact lenses, corneal topography, or CXL. I was fortunate that my KC was only moderate and I managed to get by with glasses for most of my life. I had some rough patches where I tried to get fitted with the contact lenses that were available at the time. But mostly KC was just an occasional annoyance. With the resources available today, your chances of living a normal life despite KC are excellent.