r/Keratoconus 1d ago

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

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keratomania.com
94 Upvotes

r/Keratoconus Dec 19 '25

Interactive keratoconus simulator tools by Keratomania

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keratoconusgroup.org
17 Upvotes

r/Keratoconus 2h ago

Contact Lens How do you guys with RGP lenses deal with screens and glare?

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10 Upvotes

Hey everyone,
I’ve been wearing RGP (rigid gas permeable) contact lenses since February 2026. I had cross-linking done in both eyes in 2025. I don’t wear them every single day.

What’s really been getting me down are the glare and double vision/ghosting whenever I look at screens—TV, phone, computer, you name it. My biggest disappointment is the computer, because I love gaming and really thought I’d finally be able to play comfortably again… I even bought a new monitor thinking everything would look crisp with the lenses.

I’ve tried adjusting colors, brightness, playing with the living room blinds open, closed… nothing reduces the glare.

The other day, while wearing my lenses, I gently lifted my lower eyelids slightly upward, and my vision became perfect—zero glare or reflections. It felt like the lens had finally settled into the right position. But as soon as I let go of my eyelids, the glare came right back.

I brought this up to my ophthalmologist during my initial fitting, and he said the glare was normal since it was my first time wearing them. On my second visit, he said the fit was perfect, but maybe my pupils are larger than average, which could be contributing to the glare. On the third visit, he insisted the sizing and fit were fine, suggested turning down screen brightness, and told me to try tilting my head to find a good angle (?).

I asked if there were glasses I could wear over them—like anti-glare gaming glasses—and he said those don’t work. I asked if scleral lenses might be an option, and he said maybe.

For those of you with RGP lenses, how do you actually use screens? Is this just something you have to accept, or is there any trick or workaround for it? Has anyone else noticed that gently pulling on their eyelids temporarily improves the glare? If so, did you ever figure out what was causing it? Do scleral lenses fix this problem?


r/Keratoconus 1h ago

Need Advice Will the white spot disappear?

Upvotes

Hi everyone,
I’m 21 years old and I had corneal cross-linking on my right eye about two weeks ago.
During the first two days I experienced a lot of pain and was extremely sensitive to light. On the morning of the third day, I noticed a white opacity on my cornea. Over the following days it gradually became more centralized and clearer, to the point that it is now visible to the naked eye from the outside.
It’s now been almost two weeks. Although I can live normally because the pain is gone and the inflammation has resolved, the white spot is still there. My ophthalmologist hasn’t really reassured me that it will decrease over the coming months.
Has anyone experienced something similar or knows anything about this kind of situation? The vision in my operated eye is still very blurry.
I have another follow-up appointment in a month, and in the meantime I’ve been instructed to continue using corticosteroid eye drops.
Thank you all. I’m a bit worried.


r/Keratoconus 4h ago

Need Advice Travelling to the USA and across USA from UK

1 Upvotes

Hi i am travelling to the USA in a few days time from the UK. I'll be travelling across the country for a week and will be getting two domestic flights when im there.

Im travelling for work and intent to take only hand luggage + cabin suitcase. Do i need a UK doctors medical exemption note to carry a 360ml bottle of saline solution and 150ml conditioner solution?

Has anyone got experience of this or how to approach carryon liquids allowance?

Any help would be greatly appreciated!


r/Keratoconus 4h ago

Contact Lens Broke my lens and am unable to see properly through other lens when I use it for a 2nd time in a day

1 Upvotes

Hey guys

I broke my right eye lens by slipping the bottle of cleaning solution and it fell on the lens and the issue is I just entered back to clg and now I'll be blind again

I don't know what to do other than cry right now or kill myself bcuz of how messed up my life is

The issue in my left eye lens is that I can easily wear it for 8 hrs at a time after which it starts paining so I remove it and reapply but nowadays it starts getting hazed in 1 hr of reapplying there's no bubbles or anything and with my right lens gone and this hazing i am practically a blind guy

Is there any way I can solve this hazing or figure out why it's happening

Plus I used to wear my left lens easily for 10hrs or more few months back but now 8 hrs feel dificult


r/Keratoconus 5h ago

My KC Journey Keratoconus Diagnosis and Treatment Plan

1 Upvotes

Today, I had my corneal topography test, and afterward, I met with my ophthalmologist to discuss the results. The doctor confirmed that I have keratoconus. He explained the condition in detail, although much of the explanation involved technical terminology that I don't fully remember.

The main recommendation was to undergo corneal collagen cross-linking (CXL) for my right eye first, as that is the eye where I currently experience blurry vision. According to the doctor, the procedure can help stabilize the condition and prevent further progression.

He also advised that I should undergo the same CXL procedure for my left eye approximately three months later. Although I don't currently have noticeable symptoms or blurry vision in my left eye, the doctor explained that it could be affected in the future, and treating it proactively would be beneficial if needed.

One reassuring point he mentioned is that, since I am over 30 years old, the progression of keratoconus often slows down or may even stop at this stage of life. He also believes that I may have actually had keratoconus for nearly 10 years, even though I only started noticing blurry vision in my right eye about a month ago. This suggests that the condition can remain undetected for a long time before symptoms become noticeable.

At this point, my plan is to proceed with the CXL procedure for my right eye within the next two to three weeks. After allowing sufficient time for recovery, I intend to undergo the same procedure for my left eye, following my doctor's recommendation.


r/Keratoconus 5h ago

Contact Lens Lentes RGP muito desconfortaveis nos últimos meses

1 Upvotes

Olá, pessoal! Fui diagnosticado com ceratocone em 2023, tenho 25 anos hoje. Comprei a lente RGP a mais ou menos 2 anos e meio atrás. Fui no oftomologista recentemente e o Dr. especialista em ceratocone disse que está tudo bem com as lentes e o encaixe dela na cornea.

Estou sem saber o que fazer, ultimamente tenho tido desconforto, antigamente eu conseguia ficar o dia todo com a lente, em alguns dias a lente queria sair e sentia o peso como se tivesse um tijolo encima do olho, mas era mais dificil disso acontecer, nas ultimas semanas e meses isso tem sido frequente, praticamente dia sim e dia não a lente gera esse desconforto. Enxergo bem com a lente, uso só no olho direito, mas sem ela tenho dificiuldade pra trabalhar, minha visão fica ruim, tenho ceratocone grau 2.

O que posso fazer? Já tentei usar uns 3 colirios diferentes e não adianta, o oftomologista diz que o encaixe e a lente está tudo bem, pode usar mais 1 ano tranquilo... O que pode ser? Devo procurar outra opinião? Outro oftomologista? Meu oftomo diz que não tem necessidade de lente escleral, pois me adaptei bem a lente rigida... Não sei o qu faço.


r/Keratoconus 5h ago

Experimental Treatment Considering CTAK Surgery at Mass Eye and Ear — anyone had it done?

1 Upvotes

Hi all, I'm looking into getting CTAK surgery at Mass Eye and Ear. I know it's a newer procedure and won't correct vision 100%. Has anyone here had it done?

Are you happy with the results?

What should I expect during recovery?

How much did your eyesight improve once fully healed?

Would love to hear real experiences before I move forward. Thanks!


r/Keratoconus 7h ago

Need Advice Intacs and soft contact lenses

1 Upvotes

I went to see a specialist yesterday and received a few options on how to correct my vision. The doctor recommended intacs, starting with my left eye (worse of the two). The hope is that I can possibly achieve corrected vision with glasses or a soft contact. The second option is to go straight to Scleral lenses.

My history includes CXL back in 2015, and unsuccessful fits with RGP, hybrid and Scleral lenses. I currently wear glasses, but my aging eyes are worsening my vision so I need to find a better solution.

Has anyone gone down the intac route and successfully achieved 20/20 or 20/25 vision with just a soft contact following the surgery?


r/Keratoconus 1d ago

Just Diagnosed Went in Expecting Glasses, Walked Out Hearing "Keratoconus"

23 Upvotes

Yesterday, I went to an eye doctor because I had been experiencing blurry vision in my right eye. I assumed it was just a change in my prescription and that I'd need a new pair of glasses.

After examining my eyes, the doctor told me that it might be keratoconus. I had never even heard that word before, so it came as a complete surprise. The doctor explained that glasses alone might not be able to correct my vision and that, if it is keratoconus, I could gradually lose vision in my right eye. Hearing that was honestly a shock. I walked into the appointment expecting a simple prescription update, and instead I left worried about my eyesight.

The diagnosis isn't confirmed yet. I still need to undergo one more test, and only then will I know for sure whether it's keratoconus. If it is confirmed, the doctor said I may need a procedure called corneal cross-linking (often referred to as light therapy) to stop the condition from progressing. If that isn't enough, surgery could be necessary later on.

Right now, I'm just hoping for the best while preparing for whatever comes next.

If anyone here has been diagnosed with keratoconus or has gone through treatment, I'd really appreciate hearing about your experience. What was your journey like, and how has your vision been since treatment?


r/Keratoconus 1d ago

Contact Lens Which cleaning solution are you using?

4 Upvotes

Hello from India, which cleaning solution are you using?.

I am currently using boston simplus and looking for better alternatives that are available in india. BTW, I am having scaleral lense. Thanks in advance.


r/Keratoconus 23h ago

Just Diagnosed Newly Diagnosed

5 Upvotes

Hello!
I just got diagnosed with keratoconus today and will be soon scheduling a consultation for cross linking. I’m feeling a lot of anxiety and uncertainty around this diagnosis, I know it’s not terminal or anything but it still feels scary to me lol. I’ve worn glasses my whole life and only recently have I been struggling to see with them but it’s not that severe. I can still see just getting more and more difficult to read stuff far away.

Anyway! The plan right now is to look into the cross linking and I’m also getting fitted for scleral lenses. I’ve worn contacts before but usually used daily ones and never really loved them cause I didn’t like dealing with them drying out and getting uncomfy and things like that. I guess I’m just wondering about everyone else’s experiences and what it’s like to have this condition and deal with it. I’m scrolling through the posts but just wanted to post here myself and welcome any advice or experiences!


r/Keratoconus 20h ago

Crosslinking Cxl riboflavin shortage

1 Upvotes

I went to a new ophthalmologist, Dr Rostov in Bellevue WA. She said she was a researcher on clinical trials for cross linking and epi on showed the same effectiveness as epi off. She said the epi off FDA approved materials (riboflavin I believe) was discontinued but the new epi on supply was delayed. So she said no one is doing FDA approved cross linking right now unless they had a stockpile.

I hadn’t heard of this and looking on here it looks like people are still getting cross linking. So I’m curious about the validity of this. She also said that epi off is going away and all cross linking in the future will be epi on. Thought this was interesting. Has anyone heard this?


r/Keratoconus 1d ago

General Terrible eye pain due to wrong sleeping posture

5 Upvotes

Not seeking any suggestions just here to rant

So my right eye is the more affected one and my doctor has advised me not to sleep facing towards the right side of my bed

So I always sleep on my left or just straight like an Egyptian mummy but somehow slept on my right last night

As would happen, my right eye has been hurting and throbbing all day long

this thing can really suck the life out of you at moments


r/Keratoconus 2d ago

Meme the struggle is real

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169 Upvotes

r/Keratoconus 1d ago

Corneal Transplant Loose stitch and weeping eye

1 Upvotes

So my partner had his 1 week post op follow up today and he's apparently got a loose stitch which is causing his eye to leak and weep a lot. He has to go back in to surgery again on Thursday to fix this. He's been told it'll likely just be drop and maybe a local around his eye if necessary. He's obviously a bit worried about this development but the doctor has told him that its actually quite normal and happens to a lot of people. They've put a soft lense in his eye to act as a temporary shield of sorts and he's got an eye shield to wear over the top as well.

Just wanted to share this update and see if anyone else has had to go back in for something like this before.


r/Keratoconus 1d ago

Just Diagnosed Partial, temporary relief for gamers awaiting lenses.

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29 Upvotes

I'm currently waiting on my first pair of RGP lenses (I don't have my hopes held high, based on how the fitting appointment went)...

This is a little ridiculous (who cares, it's only my partner and I), but since diagnosis, I learned a trick which at least halves the glare I'm getting while I'm playing games or watching things on a screen, that require a little more detailed vision...

I've added black insulation tape across the inside of my glasses, around the level of my pupils - it works similarly to the pinhole test and allows me to raise my head a little to block some of the glare and I can see little details a lot better when I need to.

I've been playing Rain World a lot this last week and it makes the world of difference. I can't see any of the sticks, rocks and other such objects otherwise.

I also cannot play GTA for a significant period of time the in-game sun is setting, due to the contrast between the sky and the ground - while driving, the sky glares over the road, blocking my view of the majority of the road, my vehicle and oncoming vehicles, but these glasses kind of help, not that I've played GTA much for the last few months.


r/Keratoconus 1d ago

Need Advice Switch from RGPs

3 Upvotes

RGP lens are not the comfortable for me. My doctor told me I should check Hybrid or Scleral lens. For people who made the switch or already use hybrid or scleral lens please let me know are there any upsides or downsides to switching.


r/Keratoconus 2d ago

General Do you guys still like watching movies and playing video games ?

31 Upvotes

r/Keratoconus 1d ago

General We just discovered my brother 24 year old is suffering from karatoconus we are genuinely scared and his eyes numbers are in negative 4 and 5 what is the next procedure will his eyes be 100 cured what operation he is going to get please help!!!

0 Upvotes

r/Keratoconus 1d ago

Crosslinking Help me out please

6 Upvotes

I had CXL done on one eye, and now I’m really worried. Before the procedure, people used to talk about blurry subtitles and ghosting, but I could easily see subtitles, use my laptop, and even code without any problems.

Now, two weeks after CXL, I can’t see my laptop screen clearly or read subtitles with my treated eye. Everything looks blurry, and the ghosting that people describe is now very real for me. I didn’t have these issues before the treatment. The only problem I had before CXL was that my glasses prescription kept changing frequently. Other than that, I didn’t experience noticeable ghosting or difficulty using screens.

I’m also scared about what will happen when I have CXL on my other eye. How will I be able to code or work on my laptop? How do other people manage this? Please help me out. I’m really worried.


r/Keratoconus 1d ago

Contact Lens RGP Routine for Outdoors

2 Upvotes

I dont go out of my house much so it is pretty convenient for me to use the lens as I clean them properly before and after use and wash my hands like 2-3 times when dealing with them. I wash my hands even before touching the bag that has the lens in it. And wash them again before touching the lens. I know this is too much but I am afraid to get infections in my eyes.

Now, I have to go out of my house almost daily. I'll add drops while the lens are in my eyes but if I have to for some reason take them out, how can I manage that because in my workspace or outside I wont have clean spaces. It is also difficult for me to carry the complete kit with me.

If you have any suggestions for the containers, fluids etc please let me know.


r/Keratoconus 1d ago

Contact Lens Really sensitive eyes

2 Upvotes

My eyes are for some reason very sensitive, when i went to the optometrist after cxl they made me put them on before i could take them with me and i could not for the life of me take it on because i either panicked just as it touched my eyes or i missed my eye entirely. So is there anyone out there that might have been struggling with this that can give me some pointers? I had the suction cup hard lenses just fyi.


r/Keratoconus 1d ago

Contact Lens HAVE I BEEN PUTTING MY RPG Lenses in a bad wall all allong?

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4 Upvotes

BAD WAY** For the title. Sorry

Hello!

Recently I learned that you are not supposed to put the contacts solution directly into the eye. I've been using SIMPLUS BAUSCH + LOMB multi purpose solution for like 15 years. Clean them, rinse them, and before putting them, I would put a drop into the lense, before putting it into my eye. Is this wrong? A friend told me that he usually rinses it and puts the lense just like that, no need for the extra drop right before puting it because allegedly "you are not supposed to put the solution directly into your eye because it can chemically burn it" LIKE WHAT. I remember sometimes I didnt had any tears I would put a small drop of simplus directly from the bottle into my eye. One time, there was a lot of air in the street and I cought a bit of something into my eye, and I put a drop into my eye to "disinfect it". Nothing ever happened hahaha.

God, am I crazy? Attaching an image of the exact Simplus solution i've been using.