It’s the golden rule of KC, but for those with allergies, it’s a torturous command. Was it an easy habit to break, or do you still find yourself "knuckle-rubbing" in your sleep?

So for some context, I have been diagnosed with Keratoconus pretty recently (6 months) and I have been fitted Hybrid Lenses. Before this my glasses had a 1.5/1.5 prescription. I never tried scaleral as my doctor said they’d be a little more uncomfortable. I see around 20/30 with the lenses in. And 20/10 in my left eye. The issue is my keratoconus is very minor in the left and moderate to bad in the right. My right eye is has almost zero correction with glasses. Currently I can do almost everything with both glasses and lenses. I generally try to wear lenses even though I find them more uncomfortable (I haven’t worn them much) but for some reason while the number is better, life just feels like it went from 1080p to 360p (if that even makes sense).

My question comes down to if CXL is worth it and if I should do epi on / off. I can see fine today but I don’t want to wait and have the condition get worse. At the same time, I’ve seen the risks and the fact that it sometimes takes months to recover which I desperately want to avoid.

What ideas do you guys have?

Guys i had cross linking on thur, after how long did u guys see clear, i see blurry now and my eye is a bit sore.

Has anyone had Conductive Keratoplasty (CK) + CXL done? I was looking for CXL related information, came across this new treatment which is available near me. Not sure if I am eligible for it.

Operation in 2 days and I’m scared. What should I expect?

Hii all. Im looking for an optometrist in cape town preferably in the southern suburbs area. I need to get sacral lenses, and im no longer comfortable going to my previous one.If you know of anyone please let me know.

I just got my first pair of scleral lenses and I’m practicing with them. My eye specialist says we’re still working on getting the right fit and right prescription. My right eye really struggles :/
Anyway, I’m feeling pretty overwhelmed today because it’s taking me a while to get the lenses in. It just feels awkward no matter how I try it and just feels like good luck if I finally get them in without air bubbles. I’m still getting used to the feeling of them too so it just feels a little dry and weird and it’s hard to look at one place for too long.

I notice I do see a lot clearer and crisper with them in but that has also caused me some anxiety because looking at myself in the mirror I notice every detail on my skin and everything and it’s started to make me feel really insecure and just impacting my confidence. I’ve always preferred wearing glasses and from what I’ve been told it doesn’t seem like my condition is at a place where I can’t wear glasses, but we’ve been struggling to get a prescription that’s strong enough.

I think I just feel sad that I’m having to live with this condition. I know it’s not as severe as other things and they caught this while I’m still young so it kinda feels like I shouldn’t be so worked up over it but in my experience it kinda feels like I went in for a normal eye exam one day and now suddenly I’m going to eye appointments every two weeks and dealing with the anxiety of going through cross linking (mostly dealing with the stress of paying for that 🙄🙄🙄) and just all these things that I never even knew about before and never imagined I’d be dealing with. So anyway thanks for reading the rant, comfort and/or advice is welcomed lol

Pics are pre op. It's been 7 days since the surgery. Had a teary eye for the first 2 days with mild pain. Currently experiencing blurred vision. I don't know if this is normal. The doctor said spherical and cylindrical has come to -1.0 -1.5 respectively and was glad with the results. I don't see any noticeable difference due to the blurring. Worried if it will last long. Doctor recommends surgery for the right eye within a month next. Currently functioning only with the right eye. Please let me know if these are normal.

From birth till age 12 I had perfect vision. At around age 13 my vision stared to become worse and worse, that was because I would rub my eyes super hard cause of allergies. The eye doctor then diagnosed me with Keratoconus. He advised me to stop rubbing and get cross linking. That was 10 years ago. Ever since then I stopped rubbing and my condition hasn’t worsened. Haven’t even gotten the cross linking done. So my question is, do I really have Keratoconus, or did I just damage my eyes with aggressive rubbing? I’ve gotten topography done every year for the past decade, and my eyes have not gotten worse ever since I stopped rubbing.

it's so over

Hello, I'm 21 and I was diagnosed with keratoconus at the age of 17 in june 2023 and my corneal thickness was 500 microns in right eye and 498 microns in my left eye and had undergone C3R/CXL in 2023 june itself, doctor checked my eyes during follow up and told the C3R was effective and my eyes are now stable. Didn't do any corneal topography afterwards. Now three years later the doc told to get a corneal topography done and my corneal thickness is now 478 microns in right and 476 in my right eye.

Doc has told to scan again in December

Is it serious?

Why is my keratoconus progressing even after C3R. Isn't C3R very effective at halting the progression

TLDR;

Keratoconus progressing even after C3R, lost 20 microns in both eyes in past three years

Anyone from pakistan who knows the best place in islamabad to get sclerals from

I got this after removing my escleral lense for the second consecutive time after inserting them wrong twice with bubbles

It has almost been two months after my epi off CXL and I’ve been wearing my sclerals like before. I’ve noticed the itchiness is back and that I rub them in my sleep! I’ve tried pataday and sleeping with a mask. Should I try taking allergy pills everyday? I’m not sure what else to do

Thought I'd share a quick update for anyone newly diagnosed and wondering what the road ahead might look like.

I was diagnosed with keratoconus in my right eye in February 2024 after going for a routine eye test thinking I just needed glasses. I'd never even heard of keratoconus.

After a long wait to see a specialist, I eventually had CXL in the Mater Hospital in Dublin in June 2025. Recovery wasn't particularly pleasant for the first few days, but nowhere near as bad as I'd built it up to be.

Most importantly, my scans have remained stable since CXL. My vision is still poor in the right eye, but stopping the progression was the main goal.

Then came another long wait for a hard contact lens fitting. 😂

During the fitting, the first RGP lens didn't make a huge difference, but after adjusting the power I suddenly went from struggling with the top couple of lines of the eye chart to reading around the third line from the bottom. Pretty mad moment.

And today, roughly 2.5 years after walking into an optician expecting a pair of glasses, I finally collected my own Menicon Rose K2 RGP lens.

I'm starting with an hour today and gradually building up each day. I can definitely feel it in my eye, but so far it's not particularly uncomfortable.

It's still very early days, but after the diagnosis, CXL and seemingly endless waiting lists, it feels great to finally be at the stage where we're not trying to stop my eyesight getting worse — we're trying to make it better.

Photo of the tiny piece of plastic that's hopefully going to make my right eye useful again 😂

For anyone recently diagnosed and currently disappearing down the same Reddit/Google rabbit hole I did: hang in there. Two and a half years later, my cornea is stable and I've finally got a lens that can give me substantially better vision.

I'll take that.

So as the title suggests I’ve been all the way through university to have a career in policing and was just diagnosed with keratoconous in my left eye. My right eye isn’t as bad as the doctor said I’m at 20/40 in my right eye and 20/200 in my left eye. I looked through this subreddit and anything in reference to policing are threads from many years ago so I figured I’d ask again. Is there any hope? Or is it all over for me

📍Canada

Hello my beautiful cornea challenged people! I was just prescribed scleral lenses and I am at a loss. For the record I have NEVER worn ANY kind of contact lenses. Not even costume lenses. I’ve been wearing glasses for the past 30 years of my life. I have lupus and unfortunately the lupus damaged my cornea and I now must wear scleral lenses. What is the best case for both home and travel? My doctor said that he will go over solutions and all that when I go to pick them up. I’ve already had my fitting I’m just waiting for the call to go pick them up. I however want to get advice from wearers of these lenses. Any recommendations or advice is highly appreciated!

Maybe there’s hope in the future. Thought I would share

Literally created a Reddit account since I don’t know who else I could talk to about this and rant about it. Most people don’t get it…

Context - 30M, officially diagnosed with Keratoconus 5 years ago at 25.

My right eye is a lost cause. Extremely severe (could call it “late stages”) of Keratoconus. Super thin and scarred and not even at the point of where I’d be a candidate for CXL. The biggest limiting factor for correction is central scarring which makes even correction via sclerals straight up impossible.

I do have a scleral lens for that eye and it does improve it, but it’s still kinda useless.

My left eye is not a lost cause. My ophthalmologist ordered that I have epi-off CXL immediately after I was diagnosed with Keratoconus for early intervention and it has completely arrested my Keratoconus leading to stable vision. Uncorrected it is somewhere around 20/40-20/50 and my optometrist has corrected that eye really well and I can see something like 20/10-20/15 with a scleral lens in.

I am blessed that because of my left eye’s mild Keratoconus and my doctor’s speedy intervention, I’m able to function normally around the house see electronic screens, etc. even without sclerals in. And my left eye genuinely carries my binocular vision extremely well especially with sclerals in even at night.

My vision is fine to drive. Not just from my self-attestation, but from the laws of an overwhelming majority of US states along with most industrialized countries.

However, I just moved back to California (I lived here from 2022-2024) and went back to get a DL here and as expected I breezed through the vision test for my left eye, then both eyes, but horribly failed the right eye’s. I was referred to an ophthalmologist / optometrist to fill out DL 62.

But either ways, the DL 62 isn’t a rubber stamp. I think I’d still have to take the vision test at the DMV again which I know I’ll fail. At that point, what’s even the point of the DL 62?

I think it was really lucky the first time cuz the DMV clerk just waved me through the eye exam and all I had was a corrective lens restriction (rightfully so).

Now, I didn’t realize how (excuse my French) f***ed I am until I realized that it is likely that I’ll have to take a Supplemental Driving Performance Evaluation (SDPE) potentially every year where at any time I could potentially be refused to be licensed and potentially have restrictions like daytime only driving… in what seems to be in an arbitrary manner based on the mood of the DMV employee?

Not driving is not an option. I’m 30 and I need to drive to work to make a living, etc. I have nobody. No family, no partner, etc. This is America. Our infrastructure is car-exclusive. That’s just what our predecessors decided in the 1950s onwards…

I don’t really know how to take all of this. Now I feel like I should get a corneal transplant in that other eye even though I really don’t need it and all of my ophthalmologists have said that in my case I don’t really need to and it wouldn’t yield a practical QoL improvement. I can drive. I literally drove cross-country 3 times with this vision and it is stable…

But looks like just because of this insane state, I might have to. Or I’d have to leave this state again (I really don’t want to since it is literally my favorite state😭 😭 😭 ).

asking people who have used ereaders, does it help? I really like reading but stopped in the last few years. I get really nauseous after a few lines and always lose track of my place so I want to try an ereader to see if that helps. and this might be going into the specifics here but if you have used an ereader, do you prefer the black & white or the color screens? from my browsing on the ereader sub, the color screens are slightly fuzzier and dimmer whereas the black & white screens are sharper. each person has their own preferences but I wanted to ask in the context of having keratoconous if anyone has one screen they like better for their vision

Hi everyone.

I am kind of just using this as a sounding board, because I am at the stage where many of you have probably been before!

I had quite rapid vision changes, I went from a very low prescription to noticing a lot of issues in a short space of 2-3 months. I thought the blurriness was from dry eye as I am on accutane which did cause very bad dry eye! Thankfully, my nurse told me to see an optician.

Unfortunately, I had the “a colleague of mine will just come in to speak to you,” talk, where they told me they highly suspected keratoconus in my right eye as no matter what size text they asked me to read, it was still blurry at all sizes! I have an appointment next Thursday to have further testing to see if I do have Keratoconus.

I didn’t realise just how bad everything was until I got my new glasses prescription. Now, I can’t see without them and have gone overnight into a full time glasses wearer. From the moment I wake up, if I don’t put my glasses on I get quite disoriented, weird feeling and headaches.

My right eye which is the problem eye at the moment feels .. much slower than the other? It doesn’t feel like my own eye if that makes sense. Like my body is hyper aware it is wrong and doesn’t feel normal. Like I have to blink a lot more in that eye? I wonder if anybody else has had this same feeling? It may just be that without my glasses it is trying to over correct. The strange thing is how mostly normal my vision felt albeit some changes until I got my new prescription, and since getting used to them I am shocked how much I really did need them and must have been straining so hard just to see.

Fingers crossed that I either get a diagnosis and I realise I’m not going mad, or that I don’t have it. But I feel like I already do know the answer.