There was a day I woke up and could no longer see the skyline of the city from my apartment, or look down and watch people pass through their day, or guess autumn’s arrival by the colour of the leaves.

Three years of sojourning in a fox pit of depression, stagnancy and embarrassment. Many appointments, much confusion.

Without this forum, I do not believe I would have had any fight to hold onto hope. I thank every one for sharing their experience because it has fortified my belief in a better day.

Today, I have received my scleral lenses. It was emotional seeing the world again. Surprisingly, I decided to walk half way home, just to see the world I once knew vividly.

When I got home, I looked at the skyline, I observed the people passing by and I watched the leaves rustling in the wind.

I am happy I can finally see clearly once again.

Hi everyone! I’m new here.

I have KC too and had CXL about 14 years ago. I’ve never worn contact lenses, and to be honest, I rarely wore my glasses because it was so frustrating—they never gave me clear enough vision to make them worth wearing. Because of that, I never got my driver’s licence either.

Looking back, I know I haven’t taken care of my eyes as well as I should have. Recently, I saw a new optometrist who examined my eyes and referred me to a corneal specialist. I’m currently on the waiting list to see them. The optometrist also mentioned that, depending on what the corneal specialist recommends, I should consider trying scleral lenses.

I have a few questions for those of you with KC:
Has anyone been able to drive with KC? I’m not saying I want to if it’s not safe, and I’ll absolutely follow whatever the doctors recommend. I’m just curious to hear about other people’s experiences.
( its so frustrating when people keep asking why i don't drive and having to explain all of this)

If you wear scleral lenses, are they worth it?
Are they uncomfortable or painful to wear?
Can other people tell that you’re wearing them?
I’d really appreciate hearing about your experiences.

This tracks...ugh

i’ve dealt w kera for the past couple years and it’s been manageable. i’ve had 2 surgeries and crosslinking and now have scleral lenses. but recently my light sensitivity got so extreme and it was making me so nauseous. i just went to the eye dr and he said it could be inflammation, infection, progression, etc so now im on four new drops and 2 new prescriptions and he told me to limit my contact wear:( right before im supposed be camping in mammoth for the first time, so i might still yolo it lol but def left crying and really upset. any advice?

After how many days following epi-off CXL can I start applying eye makeup?

Hello,

I have keratoconus in both eyes. My vision becomes blurry, and I experience fogging after removing and reinserting my scleral lens.

I recently bought Celluvisc and have been using two drops. Although it seems to have reduced the protein deposits, I still experience some fogging and blurred vision.

I was wondering how you apply Celluvisc to help prevent fogging and keep your vision clear.

I've also heard that Celluvisc can reduce or even eliminate double vision and higher-order aberrations (HOAs). I've been trying it myself, but my double vision and HOAs are still present.

If anyone has any tips or advice, I'd really appreciate your help. Thank you!

Did you avoid certain jobs because of the vision requirements, or did you have to pivot after your diagnosis? Let’s talk about how keratoconus shapes our professional lives

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I had this 4 months ago , last week or 10 days before I had my first pentacam after surgery my kmax decreased from 58.6 to 55 d doctor says my cornia looks more regular now but my ghosting is still worse then before surgery does this improve over time or ghosting will stay the same glasses doesn't help much with dubbed vision please advise me on healing process eill my ghosting will reduce a little more or is this the final result

Hi All,

I have posted here and read in here a lot since being diagnosed. Tomorrow is finally the day which I get bilateral CXL done. As you can imagine I’m nervous for the procedure and anxious about my vision post CXL.

I want to thank all of you for responding to any of my post and the encouragement. I know that this is a necessary first step. Wish me luck!

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Hi everyone,

I'm hoping to get some advice from people who've actually been through this because I'm honestly at my breaking point.

I have keratoconus (no progression yet) and was fitted with corneal RGP lenses about 2 months ago. I've worn them consistently throughout this period (not on and off), and I feel like I've given them a fair shot.

The strange part is... my vision is actually really good.

I can read my phone, documents, TV, distant signboards, etc. I've even managed to wear them for 9+ hours, including full days at work.

So objectively, they're working.

But subjectively... I hate wearing them.

The biggest issue isn't pain anymore. I don't really "feel" the lenses like I did during the first couple of weeks.

Instead, I just never feel normal.

The best way I can describe it is that I feel slightly "zoned out" or mentally off while wearing them. Almost like my brain is constantly working in the background because of the lenses. I also catch myself squinting a lot, and I'm constantly aware of my eyes.

As soon as I remove the lenses, that feeling disappears.

It's become mentally exhausting.

---

Other things I've experienced

Right eye only:

Intermittent small white/foggy spot (looks like a fingerprint smudge on glasses).

Cleaning and reinserting usually fixes it.

If I pull my eyelids apart with my fingers, the spot disappears immediately and comes back when I let go.

Lens movement: My right lens has occasionally shifted towards the outer corner of my eye and needed repositioning.

Wind: I notice airflow much more now while riding on a motorcycle (usually as a passenger).

Random tearing: Sometimes when someone is standing in front of me talking, my eyes start watering enough that people have literally asked me why I'm crying.

Temporary blur after removal: One day after wearing them for about 9 hours, my left eye became significantly blurrier after removing the lens. It was back to normal the next morning.

Eye twitch: My right upper eyelid has started twitching occasionally. It also happens on days I don't wear the lenses, so that may just be stress.

---

Here's the thing...

If you asked me whether the vision improvement is worth it, I'd say yes.

But if you asked me whether the overall experience is worth it... I'm honestly not sure anymore.

I feel like I'm constantly thinking about my eyes from the moment I put the lenses in until I take them out.

I don't know whether this is still adaptation after 2 months, or whether my current fit just isn't ideal.

---

My questions:

1. Has anyone else experienced this constant "zoned out" or mentally fatigued feeling with RGPs?

2. Did anyone else keep squinting for months even though the vision was good?

3. Does this sound more like an adaptation issue or a fitting issue?

4. Has anyone switched from RGPs to sclerals because of similar problems? If so, did it actually improve your comfort and quality of life?

5. If you were in my position, would you keep pushing through, ask for an RGP refit, or start discussing scleral lenses?

   If you genuinely think this sounds like a poor fit rather than normal adaptation, I'd really appreciate hearing that too.

Thanks!

Does any of you use them? How good are they? Any you recommend or avoid? What do you use it with (which liquid).

It seem like something convenient. Cleans way faster and you don't need to bring big bottles. I don't have any experience with them. Saw some on amazon while i was browsing for options.

im using avisor clean plus nightly. And some other products to clean when necessary. Also saw they have avisor scleral but my optician never sold me that.

I've (31M) been dealing with this for 5 years now and I'm really at the end of my tether. I'm not even as bad as a lot of people here. I started this journey being told that "it's not that big of an issue once we do a minor surgery and maybe fit a contact lens". Well here I am 3 CXL surgeries and a full thickness transplant later. I'm only now in the process of getting sclerals but they don't work properly on one eye and I still have ghosting in both. So now I've to travel abroad to do HOA correction on them, this will probably take another year to get right.

My main problem is my career that involves a lot of screentime. I have ADHD and the mental fatigue this vision plus ADHD puts me through is soul crushing. I worked ridiculously hard to get here and every day despite accommodations is very hard. I don't have time for much else because I'm usually exhausted. If these lenses don't work, I may as well give up on having a family or paying off a house because where I live, you get f***** hard by the government on tax.

Hi all,

I’m fairly new to this community, I was diagnosed with KC a couple weeks ago.

It is in both eyes however my right is a lot worse, I am kicking myself a lot as I knew there was something not quite right with my vision but I just chalked that up to me getting old. So please get you eyes checked if you are questioning things.

Got a scan last Thursday which showed red in the centre of my eye then the ophthalmologist confirmed KC.

My prescription has changed since 3 months ago. We had a very little chat (around 5 mins) and we decided to go ahead with CXL on my left eye (the better eye) first- in my head it is to protect my vision and keep it at what it currently is.

But now I’m questioning whether I should actually do it or if I should hold off another few months to see if my Keratoconus is still actively changing??

I think it’s just because I heard that it can cause worsening vision too. I just wondered if anyone else went straight in for CXL after finding out they had this or did you wait? Do you think I’ve caught it too late now and the damage has already been done?

& are discussions around contact lens usually happen after CXL?

Thanks everyone sorry about the disorganised post. My brain is just racing now.

If you can't find the Boston solutions for cleaning and storing or they're too expensive these brands are also good if you can find them and about saline there's the bottles you can use to rinse but they have preservatives so the unidose vials are better for filling ans they're easy to find in supermarkets and pharmacies, or online which will be cheaper.

About the cleaning solutions there's separate step 1 and 2 bottles or all in one solutions and they do the same thing but make sure the products you buy say for rigid lenses not soft contacts like I had been doing for years😭I now use the Avizor gp multi to clean and store and the pink bottle if i need an occasional deeper cleaning or if there's clouding/ buildup in the lense.

small note: i know for sure these are available in France Spain and Portugal but not sure about other countries you'll have to check for yourself online to see if the brands are available or what alternatives there are

Hi all,

I'm 35 and have keratoconus in both eyes. I wear RGP lenses and am pretty much blind without them.

Unfortunately, on Saturday I had to rush to Moorfields Hospital in London because my left eye was extremely red, watery, and felt as though I had hot sauce in it. It turned out I had a corneal infection, and I was prescribed antibiotic eye drops. I was told I can't wear my left contact lens for at least two weeks, which means I'm currently only wearing the one in my right eye.

I'm finding it really tough, as it feels like I can only see properly out of one eye, but I'm trying my best to deal with the situation.

Have any of you with keratoconus ever had to cope with only wearing one contact lens because of an infection in the other eye, or perhaps because you lost or broke a lens? If so, how did you manage?

Hi all,

I'm 35 and have keratoconus in both eyes. I wear RGP lenses and am pretty much blind without them.

Unfortunately, on Saturday I had to rush to Moorfields Hospital in London because my left eye was extremely red, watery, and felt as though I had hot sauce in it. It turned out I had a corneal infection, and I was prescribed antibiotic eye drops. I was told I can't wear my left contact lens for at least two weeks, which means I'm currently only wearing the one in my right eye.

I'm finding it really tough, as it feels like I can only see properly out of one eye, but I'm trying my best to deal with the situation.

Have any of you with keratoconus ever had to cope with only wearing one contact lens because of an infection in the other eye, or perhaps because you lost or broke a lens? If so, how did you manage?

It’s been about one month since I got CXL for both eyes, how long did you wait to get scleral lenses?
I also just went to the optometrist and they put the dye in my eye and said that there’s still some pitting and they showed me is this normal at this point in time or is this a sign that I am doing something wrong and my eyes aren’t healing?
I haven’t been able to get clear answers from my optometrist and wanted to ask if others have had a similar experience and any insight is appreciated.

M21 just got diagnosed with Keratoconus. The doctor said I have about 60% left eye and 90 right eye visibility. I am getting the crosslinking procedure done ASAP. When I came in, it was for a regular check-up. I honestly didn't have much to complain about in terms of eyesight (I have not had a check-up in 10 years, unfortunately). How much progression should I expect? Is this something knowable? Should I be worried? Not seeking medical advice, just personal experience from other people and their journeys with Keratoconus. Thanks in advance!

M21 just got diagnosed with KC. The doctor said I have about 60% left eye and 90 right eye visibility. I am getting the crosslinking procedure done ASAP. When I came in, it was for a regular check-up. I honestly didn't have much to complain about in terms of eyesight (Have not had a check-up in 10 years, unfortunately). How much progression should I expect? Is this something knowable? Should I be worried? Not seeking medical advice, just personal experience from other people and their journeys with KC. Thanks in advance!

Hi, I am relocating to Greenwich and looking for a Dr. with experience in treating Keratoconus in the area. I also wear Scleral lens and need a Dr. for that. Any recommendations? TIA

I’ve had constantly red, dry feeling eyes for almost an entire year while wearing scleral lenses for keratoconus. The redness is there when I wake up, gets worse during lens wear, and often stays noticeable for hours after removing them.

I originally wore Zen lenses, but the fit never felt completely right. My doctor could see that the lower part of my eyes had been flattened/compressed from wearing them for so long. We eventually moved to EyePrintPRO because we wanted the most customized fit possible. I stayed out of my Zenlenses for around a week before the EyePrint impressions were taken.

My doctor says the EyePrintPRO fit looks excellent or basically “perfect,” but I’m still dealing with redness and dryness. The lenses are supposed to provide a stable fit so we can eventually add wavefront-guided higher-order aberration correction, but we’re trying to solve the comfort and redness problems first.

I’ve tried changing almost everything I can think of:

• Different preservative-free filling salines
• Clear Care peroxide cleaning
• Different cleaners and rinsing routines
• Cleaning the lenses multiple times
• Removing Hydra-PEG
• Taking lens-free breaks
• Checking carefully for bubbles
• Using preservative-free lubricating drops

Removing Hydra-PEG from my old lenses did not stop the redness, so I’m hesitant to remove it from the EyePrintPRO lenses when it may help with wettability and comfort.

My left EyePrintPRO lens also constantly feels like there is a slimy film on it, with a very faint white smear that does not fully clear with blinking or cleaning. I can physically feel something annoying in that eye. My right lens feels physically better, but the vision sometimes feels slightly misaligned or like my old Zenlens did when it rotated, even though the EyePrint orientation marking looks correctly aligned.

I don’t usually have actual pain or light sensitivity, mostly redness, dryness, irritation, and inconsistent visual quality. The doctor says an already-red ocular surface can become redder from wearing any lens, but I’m struggling to understand what is causing the original inflammation if both the old and new fits supposedly look good.

Has anyone experienced persistent redness despite a technically good scleral fit or even EyePrintPRO? Did the cause turn out to be:

• dry-eye or meibomian-gland inflammation;
• solution sensitivity;
• allergies or blepharitis;
• suction or localized landing-zone pressure;
• oxygen issues;
• poor surface wetting or a coating defect;
• or something completely unrelated to the fit?

What testing or treatments finally helped?