r/Keratoconus • • Jul 21 '26

Vision Simulation "Just get glasses." Send this interactive keratoconus simulator to anyone who says this to you.

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keratomania.com
105 Upvotes

r/Keratoconus • • Apr 06 '23

General Keratoconus FAQs: Common Questions and Answers

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keratoconusgroup.org
7 Upvotes

r/Keratoconus • • 23h ago

Contact Lens Had my first scleral lens trial today and I finally understand the hype

31 Upvotes

I had my first scleral lens trial today, and I knew people said these lenses were life-changing, but I still wasn't expecting this much of a difference.

My left eye is the worse one, and it was definitely harder to improve, but the results were still pretty good. My right eye, on the other hand, was incredible. Better than 20/20, and the improvement in my overall vision is honestly hard to describe.

I finally understand what people here mean when they talk about not being able to stop looking at their own face, lmao. I could see all the little imperfections in my skin and it was definitely kinda gross. I could make out the individual fibres of lint and creases on clothes, that i never noticed before. There's something almost uncomfortable about suddenly seeing that much detail.

That said, there's still some ghosting, and the starbursts seem more stubborn to get rid off, but they're still much less of a nuisance. The Snellen tests are encouraging, but most of them use a white background, which makes ghosting less noticeable, so I haven't really been able to judge how much of a difference there is in everyday situations, like reading subtitles on a dark background or at a further distance, reading a book, etc.

That said, I'd estimate around 80% of the ghosting is gone, which is a massive improvement. I'll see how much more can be achieved with adjustments to the standard lens fitting before considering HOA lenses, since those are seriously expensive.

For now, I'm genuinely happy with the results. It's a little surreal to realise how much clearer things can look, even with some imperfections still there. For anyone who's still struggling to find the right fit or hasn't had much luck yet, I hope you get there. I'm only at the trial stage myself, but this has given me a lot of hope that things can improve.


r/Keratoconus • • 22h ago

Contact Lens Lens Case Useability

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10 Upvotes

Here for scleral lens I am using clear care lens solutions this case can be used for how many month has I purchase twin pack of 355ml but got only one case, do I need to dispose case every 30 days or can it use for 2 month


r/Keratoconus • • 18h ago

Contact Lens Anyone with keratoconus tried SynergEyes UltraHealth hybrid lenses? How long have yours lasted, and are they worth it?

3 Upvotes

Hey everyone! I have keratoconus in both eyes and have had cross-linking done. Unfortunately, scleral lenses haven’t worked well for me, so my eye doctor recently ordered SynergEyes UltraHealth hybrid lenses. I’m curious to hear from anyone who’s worn them, especially when it comes to how long they last before needing replacement.

Has anyone gotten more than a year or even two years out of their UltraHealth lenses? I’m also curious about long-term comfort, whether they’ve helped with ghosting and glare (especially at night), and how they compare to scleral lenses. They’re a pretty big investment, so I’d love to hear whether they’ve been worth it for you. Any experiences, positive or negative, would be really helpful!


r/Keratoconus • • 1d ago

Need Advice Can't see with glasses any longer :/

23 Upvotes

I was diagnosed with Keratoconus when I was 18. I continued wearing soft contact lenses until 26, when I got my first pair of scleral lenses, and my life changed immediately. As many of you can probably relate, I felt like I was finally seeing for the first time in my life. It completely changed everything.

I'm 30 now, and I wear them most days, sometimes for more than 12 hours if I'm out. Luckily, I don't experience much dryness, redness, or irritation, but most days I wear them for at least 8 hours and then switch to glasses.

However, I'm starting to notice just how bad my vision is with glasses. I legit cannot see anything close up. I'm still frequently working past 8 or 9pm, and I feel like I have to wear my lenses because I just cannot see my screen well with glasses. It feels like it's gotten progressively worse, especially in the past 6 months. I went to the eye doctor earlier this year, and he said my prescription hadn't really changed much.

I have an appointment at the end of the month, and I want to get new glasses and lenses (I've had these for the past 2 years). Has anyone else experienced wearing glasses getting progressively worse over time? I know we'll never be able to see that well with them, but not being able to see things right in front of me (blurry screens, etc) is something new and I'm worried my eyes are actually getting worse, but my doctor isn't catching it. Any advice on what I should ask when I go in would be helpful!


r/Keratoconus • • 1d ago

Need Advice Gaming with Keratoconus

12 Upvotes

I have Keratoconus on both eyes and both have been done crosslinking by different eye doctors at different hospitals.The left eye is much worse than the right eye.At that time, ghosting wasn't there at all or I never paid attention maybe I had ghosting in my left eye but subtle.

During February 2026, I decided to have my right eye cross linking and 2 weeks after the procedure there was no ghosting.After 4 months passed , ghosting came and I was shocked by the discovery and it impacted my reading , gaming and observation negatively. From June till now, it has been an issue and I know I have to adapt and try to live with it but sometimes it is hard.I don't know if it is a defect that will pass or if I will have to live with it the rest of my life.

I mostly love gaming and watching videos and sometimes I have to strain to see clearly. I am asking about some of the experiences and how you were able to adapt and live well with this condition. To some of the gamers, how are you able to game regardless of this issue, e.g. games like RimWorld and Hollow Knight?


r/Keratoconus • • 1d ago

Need Advice Help! What am I going to do?

5 Upvotes
Hello everyone. Today, I want to talk about something that has happened to me a few times before. Yes, I know I shouldn't rub my eyes, but I find myself doing it the moment I wake up; I can't stop myself, even if I want to. It has been 3.5 months since I had the CXL procedure on one eye and 7.5 months since the other. I have advanced-stage keratoconus and I am 18 years old; what should I do?
Please help!

r/Keratoconus • • 1d ago

Contact Lens I am extremely scared of contacts

6 Upvotes

Recently, I (21m) got diagnosed with keratoconus, and I was told the best possible solution (after Cross Linking) is to get specialized lenses. I have never gotten lenses before, so I was very hesitant - but I agreed to try some, since I don't have my Cross Link scheduled yet and my doctor already knows what type of lenses I'd need. So, one week later, the lenses arrive, and my doctor goes through all the motions; she explains how to put them in and take them out concisely, and she even does a demonstration herself. Then, she says that she'll help me put them on and take them off a few times, and we go to do just that.

However, right as the lenses are going in, I'm suddenly gripped with this primordial FEAR that makes my stomach drop. I flinch violently each time she tried to put the lens in, and when she finally did (she did so perfectly, and she was as gentle as can be), I was so terrified that I began crying. I felt like a baby, but it was genuinely so anxiety-inducing that it brought me to tears. I was shaking, begging for her to take them out, and was borderline hyperventilating.

I have some new glasses now that I'll rely on, but I know they won't cut it. I'll need the lenses eventually. I just don't know how to get over my fear aside from 'toughen up and get used to it'. Any advice would help.


r/Keratoconus • • 1d ago

Need Advice Sceral Lense fitting

2 Upvotes

Our teen has been seeing same optometrist since his diagnosis. The optometrist has been having issues fitting his lenses correctly. How many tries should it take for a competent person to actually fit the lenses to the patient? We are at #3 already and one side is touching my son's cornea.


r/Keratoconus • • 2d ago

Need Advice Keratoconus progression in one eye

4 Upvotes

I am a KC suspect with already huge damage in my cornea, increasing HOA and astigmatism.

I am trying my best to not get this deadly disease

One is worse then other with increasing HOA and irregular astigmatism
I am worried cause the HOA in bad eye is increasing from last year

i have a Job that requires work in screens for long long hourse and bside I use my phone when i am home, the screen time on avg is 15-16hr I know its crazy but I cant reduce it. I get dry eyes very often eye strain along with...

I am NOT an eye Rubber by any chance, still I dont find whats causing the increase and it feels so frustrated not being able to prevent or stop this.

I do sleep in my stomach and I sleep in running men direction which I think pressurizes right eye often and my right eye is bad eye.

Does dry eye and prolonged eye strain increase keratoconus progression?anyone had strong increase just because of dry eyes? or eye strain from screens?

And does kc progression in stomach sleeping is higher?


r/Keratoconus • • 2d ago

Need Advice How bad is my keratoconus at 31? (Corneal topography results)

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5 Upvotes

Hi everyone,

I'm 31 years old and I have keratoconus in both eyes. I recently had corneal topography scans and I'm trying to understand how serious my condition is.

Here are some of my results:

Right eye (OD):

  • Kmax: 48.98 D
  • Thinnest corneal thickness: 488 µm

Left eye (OS):

  • Kmax: 47.15 D
  • Thinnest corneal thickness: 482 µm

I've attached my scans for reference.

Based on these results, how severe does my keratoconus look? Would you consider it mild, moderate, or advanced?

At 31, how worried should I be about further progression? Is cross-linking something I should be considering?

I'd especially appreciate hearing from anyone who has had similar results and what their experience has been.

Thanks in advance!


r/Keratoconus • • 2d ago

General World Keratoconus Day 2026: Help Others See What We See

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26 Upvotes

r/Keratoconus • • 2d ago

My KC Journey Topography Guided PRK and CCL

3 Upvotes

I am getting it done next month with dr Sourardi
I have heard great things about him. And I am hoping this actually helps. I just wanted to know if anyone else had gotten the topography guided PRK combined with the cross-linking done at the same time and what are your results. I can see about 20/20 with my left eye when I wear scleral lenses and about 20/25 to 20/30 with my right eye, which is obviously my worst eye.


r/Keratoconus • • 2d ago

Need Advice Corneal erosion in one eye

5 Upvotes

Hi everyone. I was diagnosed with keratoconus almost 30 years ago, though has been stable for the majority of that time and is managed just with glasses and no further interventions required.

The keratoconus is much worse in my left eye and for the last few years have dealt with some painful nighttime episodes where the cornea would attach to the eyelid and with eye movement upon waking or stirring, it would sometimes, and very painfully, rip the cells off my cornea - ouch! My optometrist attributed it to a dry spot on the cornea that made the sticking more likely which was made worse by the shape of the cornea forming more of a pointy apex from the keratoconus distortion. Anyway, has mostly been managed over the last few years with eye drops gel before bed and would only very occasionally get a painful attack.

It has flared up recently though and I was getting more of these waking painful attacks several times a week as I had a macro corneal erosion according to my optometrist. Moved to trialling a lubricating ointment at night but that didn't help. Finally, in the last week was trialled on a nighttime contact lens to stop contact between my cornea and eyelid which has made a big difference as all the background 'grittiness' I would always feel has gone (the anxiety of putting in and taking out contact lens is another matter as never used them before!). So now the erosion has the ability to heal without being continually aggravated.

So my question is if anyone else has suffered from this type of corneal erosion, potentially made worse by keratoconus and what you did to manage it?

Thank you


r/Keratoconus • • 3d ago

Contact Lens 18 years of keratoconus, thousands of dollars spent on lenses, and I’m honestly just exhausted.

27 Upvotes

I’m 30 years old, and I’ve been dealing with keratoconus and contact lenses since I was around 12. At this point, I’m just so frustrated and exhausted with the whole thing, and I figured people here might understand.

I was diagnosed at a pretty young age and have worn RGP lenses for most of my life. In the beginning, I could actually get away with wearing a soft contact lens in my left eye because that was my better eye. But as my vision deteriorated, so did my ability to get by with soft lenses, and eventually I needed RGPs in both eyes.

Over the years, I’ve also undergone a corneal transplant and CXL in both eyes. So I’ve been through quite a bit already.

Eventually, I switched to scleral lenses, thinking things might finally get easier. Nope. Honestly, they’ve been a nightmare.

I’ve gone through so many different lenses, designs, adjustments, doctors, and fittings over the years. It’s always something. Poor vision, uncomfortable fits, scratches, fogging, smudging, redness, pain, or lenses that just don’t seem to work the way they’re supposed to. Sometimes I feel like I’m constantly cleaning, removing, reinserting, or adjusting them just to see somewhat normally.

This past year has been especially frustrating.

I started the fitting process for my newest lenses in September 2025, using Ovitz technology with EyePrintPRO. The entire process took approximately SIX MONTHS. I didn’t actually receive my finalized lenses until around six months later because of all the fitting issues and adjustments.

And here’s the ridiculous part: the warranty apparently starts from the original order date, not when you finally receive a properly fitted pair.

So after only about TWO MONTHS of actually wearing my new lenses, my left lens literally split in half while I was removing it. I’ve worn contacts for almost two decades, and I’ve never experienced anything like that. Even my doctor acknowledged that it was unusual.

But because the warranty had already expired, the lab wouldn’t approve a courtesy replacement, and my doctor said there was nothing they could do.

Now, to make matters worse, I’ve LOST my right lens.

So after spending approximately $4,000 on these lenses and fittings, I’m basically back to square one again. I already had to pay another $2,000 for a replacement lens.

And this isn’t even a new financial burden. When I lived in California, my medically necessary lenses used to be covered by insurance, but that stopped years ago. I’ve been paying out of pocket ever since. Thousands and thousands of dollars over the years just to be able to SEE.

That’s what gets me the most. These aren’t cosmetic contacts. I’m not buying them because I want a different eye color or because I don’t feel like wearing glasses. I literally need these lenses to function and see properly.

And even after spending all this money, I’m still dealing with red rings around my eyes, discomfort, pain, inconsistent vision, fogging, and all the other nonsense that comes with wearing them.

I’m just tired. I’ve spent more than half my life dealing with this condition, and I feel like I’m constantly throwing money at something that never really gets resolved.

I know keratoconus isn’t the end of the world, and I’m grateful I have some vision, but it’s incredibly frustrating when something as basic as seeing becomes this expensive, uncomfortable, and complicated.

Has anyone else had this much trouble with scleral lenses, especially EyePrintPRO or Ovitz? Has anyone had a lens split in half after such a short period of use?

I’m also curious whether anyone has found a lens design, specialist, or fitting approach that actually worked long-term without constant issues.

At this point, I just want to be able to see comfortably without spending thousands of dollars every time something goes wrong.

Thanks for letting me vent


r/Keratoconus • • 2d ago

Contact Lens Contacts and old age

10 Upvotes

Alot of my anxiety around this disease is the future. Can I realistically continue to wear contacts into my 70s,80,and 90s? Im hoping by then there will be newer medical advancements available.

My aunt has keratoconus and is in her early 70s. Shes worn hard lenses for 50 years, so this gives me some hope for the future. But she has also expressed concerns for her future as she continues to age.


r/Keratoconus • • 3d ago

Just Diagnosed How bad is it? Be honest

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10 Upvotes

Right eye: Kmax = 46.7 and thinnest point of the cornea is 485um

Left eye: Kmax = 54.6 and thinnest point of the cornea is 457um

21 year old brazilian male. During my adolescence, rubbing my eyes was basically a hobby for me. I have always suffered from severe rhinitis and I can't breathe properly up to this day. I'm also supposed to wear glasses all the time because the nearsightness is not neglegible, but really I only wear them in class or when I have to use my computer.

I have found out recently that I suffer from keratoconus, but honestly it feels like I have 0 symptoms of this disease for some obscure reason. No halos or double vision, not extremely blurry vision etc. I have never used lens in my entire life, let alone scleral lens. But at night... things do get a little weird when I look at lamp posts. How would you guys proceed? I'm thinking about crosslinking + intracorneal ring in my left eye, and stay alert about any progress whatsoever regarding keratoconus in my right eye. In the far future, I plan to purchase an ICL lens for my right eye.

Funny thing is that I'm 99% sure the reason why my left eye has an awful case of keratoconus is not because I used to rub it more often than my right eye, but because I always sleep with my left cheek on the pillow, oftentimes pressing my (left) eye while I'm asleep. The result is that my right eye is nearly healthy, while my left eye has an advanced case of keratoconus as far as I'm concerned. That's the reason why I've bought a blackout silicone mask (with space for the eye globe etc) for me to use when I go to bed. Hope that helps a bit at least.

What would you do in my place? I appreciate any feedback. Thanks.


r/Keratoconus • • 2d ago

Contact Lens Sclerals - cognitive fatigue?

5 Upvotes

Hey guys - I just received my scleral lenses last week. I have keratoconus in both eyes - my vision is 20/200 in my left (legally blind) with corneal thickness around 464 um and the right is 20/25 with corneal thickness around 508 um. I’d been dealing with chronic migraines, photophobia, extreme cognitive fatigue, etc.
my lenses aren’t perfect and will definitely need to be adjusted, but wow! I don’t even remember being able to see this well. Somehow though, I’m experiencing even more cognitive fatigue? Is this perhaps just an acclimatization phase?


r/Keratoconus • • 3d ago

Experimental Treatment I recommend everyone talk to your doctor about VIZZ eyedrops

8 Upvotes

Ive been using Vizz ever since they came out about a year ago and they work great. Reduce my astigmatism and ghosting to the point I can drive at night. There is some redness and irritation for about 15-20min after taking them but they usually last around 8hrs for me. So I usually take them when I have something going on. Definitely a good tool to have against KC.


r/Keratoconus • • 3d ago

Need Advice Friends, how bad is my keratoconous in each eye?

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9 Upvotes

Right eye: Kmax = 46.7 and thinnest point of the cornea is 485um

Left eye: Kmax = 54.6 and thinnest point of the cornea is 457um

21 year old brazilian male. During my adolescence, rubbing my eyes was basically a hobby for me. I have always suffered from severe rhinitis and I can't breathe properly up to this day. I'm also supposed to wear glasses all the time because the nearsightness is not neglegible, but really I only wear them in class or when I have to use my computer.

I have found out recently that I suffer from keratoconus, but honestly it feels like I have 0 symptoms of this disease for some obscure reason. No halos or double vision, not extremely blurry vision etc. I have never used lens in my entire life, let alone scleral lens. But at night... things do get a little weird when I look at lamp posts. How would you guys proceed? I'm thinking about crosslinking + intracorneal ring in my left eye, and stay alert about any progress whatsoever regarding keratoconus in my right eye. In the far future, I plan to purchase an ICL lens for my right eye.

Funny thing is that I'm 99% sure the reason why my left eye has an awful case of keratoconus is not because I used to rub it more often than my right eye, but because I always sleep with my left cheek on the pillow, oftentimes pressing my (left) eye while I'm asleep. The result is that my right eye is nearly healthy, while my left eye has an advanced case of keratoconus as far as I'm concerned. That's the reason why I've bought a blackout silicone mask (with space for the eye globe etc) for me to use when I go to bed. Hope that helps a bit at least.

What would you do in my place? I apreciatte any feedback. Thanks.


r/Keratoconus • • 3d ago

Need Advice Fellow keratoconus people who wear eyeliner and mascara, please help me! 😭

13 Upvotes

Hi everyone! ❤️

I’m from Canada, and I really need some advice from fellow keratoconus warriors, especially those of you who love wearing makeup.

I love looking pretty, wearing eye pencil/kohl, mascara, and sunscreen, but honestly, it has become such a struggle.

Whenever I wear eye pencil, I usually start getting a headache by the evening. Mascara and even sunscreen can irritate my eyes, too. Sometimes my vision feels foggy or blurry, and it’s so frustrating.

I’ve tried putting eye drops in before applying eye pencil. I’ve also noticed that kohl seems a little better than regular eye pencil for me, but I still experience that foggy, blurry feeling.

I’m tired of feeling like I have to choose between being comfortable and feeling beautiful. 🥹 I want to wear a little makeup, feel confident, and enjoy getting ready without worrying about headaches or irritated eyes.

So, please share your tips and tricks with me!

  • Eye pencil/kohl: What brands do you use that work for your sensitive eyes? Are there any that you find more comfortable?
  • Mascara: Have you found one that doesn't irritate your eyes or make your vision blurry?
  • Sunscreen: Which sunscreens work for you without causing eye irritation? I'm in Canada, so Canadian product recommendations would be amazing!
  • Application tips: Do you apply makeup differently because of your keratoconus? Do you avoid the waterline or use any particular eye drops?
  • Honestly: Have you found products that genuinely work, or do you just put up with the discomfort because you love wearing makeup?

I know everyone's eyes are different, but I'd really appreciate hearing about your personal experiences. Please share your favourite brands, products, and little tricks that have made a difference.

I just want to feel beautiful and confident without paying for it with a headache by the end of the day. ❤️

Thank you, everyone! 🫶


r/Keratoconus • • 3d ago

Need Advice What car helped you drive safely at night?

8 Upvotes

I had always had pleasure of getting first hand cars like last model 3, but since my finances went tight and bad I was forced to downgrade to qashqai 2012 and I have left my night time/raining time drive due to the fact I cannot see much because of night time glare and daytime depth/peripheral vision.

So next time I wanna buy a car I have to keep things in mind, returning model 3 was a bad idea but I didn't knew this would get bad and car tech does matter.

So which car is easy, especially when you have a family?


r/Keratoconus • • 3d ago

Need Advice How do yalls eyes feel after wearing ur scalerals for 8-12 hours?

5 Upvotes

I just got my scleral for my right eye about a week ago. Just wondering what I should and shouldn't be feeling. When I wear mine for 12 hours throughout the day, I feel fine and I can see very well. I don't get any red rings around my eye either. But when I take them out and close my eye my eye feels slightly hot, it's no where near unbearable and it doesn't hurt at all but it's just something I noted and I was wondering if this is normal?

If I'm being honest I've been having more trouble getting them out than putting them in lol, sometimes the plunger doesn't pop them out easy enough but nothing more than 3-5 tries and the action of taking them out itself doesn't hurt or feel like it's pulling at my eye I guess I got the angle wrong or something


r/Keratoconus • • 3d ago

General How do you handle unsolicited advice from people who are not medical professionals?

9 Upvotes

Everyone seems to have a cure. How do you politely or firmly shut down well meaning but unhelpful suggestions?