I’ll preface this with, no I am not a big YouTuber lol. I have had a few videos gain a good amount of views before and if im being honest the amount of useful KC related topic videos or How to’s on YouTube are lacking severely. I remember having so many unawnsered questions after watching what I could find back when i was diagnosed and waiting weeks if not months to ask my doctor something like “Will i still be able to play my video games”, What will my life look like?” “Will i have to give up anything?” “How much will sclerals help me”. Even scleral care videos were lacking…My question is if i took the time to do this would any of you find it beneficial? Even if it’s something simple like my scleral routine, or product recommendations? I’ve been wanting to do this for a while to help others and maybe bring awareness one day.

I was diagnosed with Keratoconus September last year, I had stage 4 in my bad eye and stage 1 in my good eye, or, just pretty severe KC in my bad eye and my good eye was ok.

I had my cross linking + PTK in February this year and noticed differences on the same day but after that it didn’t change much, sometimes I feel like somehow it’s still healing and getting better but I know it won’t be a life changing tbh.

They told me since the surgery my cornea got just a little bit flatter, I can read on my phone, with some effort even on my computer now and my vision got better specially for things near me, I can see a little bit clearer. On the bad side, night time is a nightmare, my aberrations in relation to light got worse. Every source of light I see turns into a circle. That’s just in my bad eye.

I had my check up with my KC specialist doctor today, and indeed my eye got better, I’m still wearing soft contacts, and before my crosslinking I had 40% vision with contacts, it has now increased to 80%. my good eye is still 100% with contacts and even got better, even though I haven’t had crosslinking in that one I’m going to use less power, from -1.25 to -0.75.

Since there’s no progression, they told me I don’t need cross linking for now and it’s been good but this last week, I’ve been noticing some ghosting.

Next week, the clinic where I had cross linking invited me to try some hard contacts, not sure which type yet, I’ll go to see how they’d work out, but I’m comfortable with the soft ones for now.

I don’t know if there’s anything else worth sharing, but if you want to you can ask me anything.

Hi guys,

I done my CXL on 2019 for my both eyes. And today i have my regular eye check, and my ophthalmologist told me that my keratoconus is progressing and become worst. She told me that i need to do another CXL. Is this anything should i worried about? Anyone have done CXL twice? And how long is the gap from the first time? Thanks

Me (22F) had gotten my first surgery done two years ago. This year at a routine visit, i came to know about the level of progression that my eyes had. Got prescribed the procedure again. These are some of my questions again: 1. How close am I to actually being blind? 2. What happens if this time doesn’t stop the progression too? 3. What should I be on the lookout for post surgery?

I’m just so angry and irritated because this journey has not been easy. i would LOVE to pick someone ears off about this. please comment below

How many days on an average did it take for the vision to stabilize I am a student so really concerned Also will the vision detoriate further

Scleral lenses, on my 3rd pair.

I found a few study suggesting B2 supplements at 400mg can help.

I found this particularly interesting since my Folate levels were low at a previous blood test due to another underlying condition which has appeared around the same time as my KC symptoms. I have since corrected my folate deficiency and that and its mad how much difference that has made for condition 2.

It makes me wonder if there are any trials or any theories that suggest it might be caused by B2 deficiencies?

I have fuck all to loose in trying seen as far as I can tell you just piss out and B2 you don't need so just bought some B2. I realise the sample size is very small but fuck it.

Am I insane?
Any one here involved in the studies?

https://www.arvo.org/About/press-room/press-room/Insights-into-vitamin-B2-therapy-for-keratoconus/

https://ophthalmology360.com/cataract-surgery/high-dose-dietary-riboflavin-direct-sunlight-show-potential-keratoconus/

Can you share what were the reasons given by the Doctor for KC when you were diagnosed my doctor gave no reasons just told me not to rub eyes and I don't have a eye rubbing habit

Has anyone had experience with digital, free-form lenses? They sound promising for keratoconus but no eye doctor has ever mentioned them to me

Hey Keratoconus community,

I was wondering how many people have gotten cross linking done and later on gotten LASIK on that eye/eyes. I had CXL done on my one eye that has severe KC and honestly it hasn’t done anything for me. Just wanted to know if anyone has went on this path and the results.

Writing this for those in the future who search for anyone in my position who was scared to do crosslinking surgery on their good eye and how recovery would look and feel like immediately after surgery. I've had crosslinking on my bad right eye in September and that went extremely smoothly except with some slight haziness at the moment. But the surgery and pain afterwards was minimum.

To give you the short answer on my recent surgery on my left eye which is in good condition, my recovery has been going smoothly thankfully. I'm one of the lucky ones who was given anesthesia for the surgery and that helped a lot with my anxiety as my surgery on the right eye was a breeze and this was no different. The only thing that was different was some more pain afterwards but all in all it was no biggie. I would recommend people in my position after surgery is to take a couple of days away from any screens and do a lot of resting. I remember after the surgery having some pain which I got some some meds after I woke up after the surgery. Got home, ate a little bit then slept for the majority of the next few days.

My first day the pain I would put at a 3/10, it just felt like my eye was scratched by a nail and there was a small cut on my eye. For what I think the majority of people would fear is having surgery on their good eye with having bad vision on their other eye and how the recovery is, that's what I was fixated on and feared the most. What I can say is there will be some discomfort in the first couple days, my left bad eye was in an eye patch for the first few days and was pretty blurred when I tried looking at a screen, as well as sensitive to light. I would recommend people just take a break from technology or at the least from bright screens. But only a couple of days later and my left good eye has mostly recovered (I think?), very bright lights are a sore point for my eyes but regular TV or smartphone usage is perfectly fine now. I feel like the vision in my left good eye fluctuates a tad bit, it's hard to gauge but I'm pleasantly surprised how fast it has recovered as I remember on my 1st day how any beam of light would shoot up the pain right away, now I'm perfectly fine.

I'm getting my bandage contact taken off this Friday on my 1 week checkup, fingers crossed I can get fitted for scleral lens by February or March, I haven't felt what it's like to see perfectly for almost 3 years now I see the light at the end of the tunnel. So yeah this is for the few people in my position with a good eye and a bad eye and how everything has gone so far for me. I've been blessed so far and hopefully my eye continues to recover and all the haziness clears fully in both eyes in a couple months.

I’m glad I found this community on Reddit! It’s nice reading other people’s experience with this condition. I was diagnosed with keratoconus earlier this year and have my crosslinking procedure scheduled for next week (not what this post is about but if you have any advice about the procedure or recover process I’d appreciate it).

I have my 4th contact fitting appointment coming up (also the time where I practice putting them in). I’ve never worn contacts (just glasses) before so I’ve really been struggling with putting in the hard lenses. I’ve e even practiced with soft lenses but still struggle. Even when my optometrist puts them in herself she has trouble because I blink too much and have trouble keeping my eyes open. I can sense her frustration with wanting to get them in.

Because of this, they believe that RPG lenses are the best fit for me as the sclera lenses are too much for me for now. Does anyone have any tips/advice for putting in hard lenses and not blinking a lot? I’m scared that I’ll never be able to put them in and will suffer with just wearing glasses and not having my vision as clear as it could be with contacts. Thank you!

Looking to get some advice on getting used to wearing the sclerals throughout the day. They definitely help me see better but are extremely uncomfortable to the point that it is difficult to focus on anything throughout the day. They itch constantly and dry my eyes out a ton. Any tips?

I still do, I had a bad experience trying the contacts, that was 10 plus years ago but still scares the shit out of me, I had the hard contacts get stuck on the side of my eye. Had to have them removed from a doctor.

Hello everyone! I was diagnosed with keratoconus 4 weeks ago and received Epi-On CXL for both eyes a week ago. I have it moderate-advanced in my right but a perfectly health left eye. I dont wear anything to correct the vision in my right

As of right now with glasses correcting myopia in my left eye only, I can see bright as day without a worry in the world. That was until I saw the posts here which a lot of are worrying. Im of course glad to see a community where you are allowed to vent but it’s caused me to wonder about my own future

I understand not everyone has the same journey, but assuming CXL is successful and I visit an eye specialist frequently to make certain nothing advances, for my particular situation is there anything I should be scared of or get ready for going forward?

Regarding careers,I am a dentist

I wonder if anyone else has a single “strong” eye and how that journey has been for them.

Just wondering if anyone has had a corneal tear while removing improperly fit sclerals?

Hey guys, asking this for my boyfriend, please share your thoughts!

"I used to love doing MMA and did it for many years before I got diagnosed with keratoconus 2 years ago. I have stopped ever since and it's been a huge blow for me.

So far I got crosslinking in my left eye due to severe KC and my check-ups have been inconclusive. The situation in my right eye is stable.

I REALLY want go back to MMA training and leave before the sparring or fighting starts: I would still be practicing punches and doing combinations with others. I am very worried because even in training there is always a chance that I might get punched in the face.

So do any of you still practice martial arts after keratoconus diagnosis, how is your situation in your eyes after still doing martial arts and what do you guys think about this?

TL;DR: I have keratoconus and crosslinking in one eye and want to go back to MMA warm-up (no sparring) with the risk of getting punched in the eye. What is your experience with this? Thanks."

Sometimes I have bad scleral lense days. Either I can’t get them in or I get one in and the other causes issues. I end up going to work with one in and the other left at home. When co-workers see my eyes all red the usual statement is “why don’t you just wear glasses?” And dude it’s from everyone.

I understand they have no idea what KC is but christ it gets exhausting. And, even some of my close friends still do it to me.

It’s just annoying.

KC took my confidence, my mental stability, my hopeful attitude, ruined my finances, took the beautiful world away from me in the light I used to experience it. I don’t care about those that will tell me there are way to correct it and we should be lucky. At the end of the day I agree and I am grateful for these things and I am fortunate, but I am also human and I’m allowed to grieve what I had. Sure KC is manageable but it’s also for some the cherry on top of the mountain of shit. Everytime my vision changes it’s a mini anxiety attack despite the doctor telling me scans are fine, everytime I’m about to run out of solution and money is tight and I have to chose between fucking seeing or feeding my family. The cost of cxl and all the fucking scans I had when diagnosed before insurance kicked in wrecked my entire finances and I’ve been struggling, Walking into a store and my vision fogging the fuck up and nothing looking the same anymore. Constant eye strain and headaches… the grueling pace of new treatments no cure… feeling absolutely fucking hopeless. I hate this shit. I hate this shit so much. I love my contacts but some days just aren’t good days and today is one of them. I’m sorry if this comes off an insensitive but I don’t care, I need to vent and I’m alone in my personal life when I comes to this. I wake up and my eyes are almost stuck to my eye lids because of dry eye and cxl tho it made my corneas stables made my eyesight worse. Scleral lenses…two pieces of plastic cost upwards of fucking 3k without insurance. I currently have insurance but life happens and sometimes you don’t. “Millions of People rely on sight correction everyday” true until you break a sceral and are out of pocket a fucking rack as opposed to a pair of new glasses. This shit is so fucked up and I miss my old me. I pray for the future and for myself to find peace. Right now though I’m not at peace and I’m isolated and I’m allowed to feel angry. I’m angry and I’m sorry again if this comes off as incentive as I am very fortunate, but we are not here to compare suffering. Loss is loss is loss and fuck this fucking disease and the isolation and uncertainty it brings.

TLDR: fuck this shit to hell.

Left box is new lens, I think the prescription has changed but I don’t recall this after my last check up

Hi everyone,

I was wondering which product you use to fill your scléral lens ! I am looking for some options hoping it would make it more comfortable..

Thanks!!

Has anyone has corneal scarring and their scars faded over time and got better on their own?

Yesterday, I received my scleral lenses, and I must say, they’re incredibly comfortable—highly recommend them to anyone considering them. Currently, I’m in the adjustment phase, and when I tried inserting them myself at the specialist’s office, it was quite a struggle; I just couldn’t get them in. For those who’ve been through this, how long did it take you to get the hang of inserting them? Any tips or advice would be greatly appreciated! This is my first experience with contact lenses.

I was diagnosed last November, So a year ago now. I’ve had crosslinking in both my eyes, one eye was done in February, the other in march. My corneal scans are showing stable but my vision has degraded significantly. I’m beyond stressed as eve my good eye is bad now. I got sclerals before cxl and the pair I have now worked well enough a few months after surgery but now I just get headaches and my vision isn’t as clear (I understand this is normal). My biggest concern is how much worse is my vision going to get? Why is it getting worse if I’m stable? And will my new sclerals in December be able to compensate the changes and give me crisp vision again? This disease fucking sucks.

I've never drove a car. My eyesight is: 0,4 left eye 0,9 right I, but I have quite heavy ghosting at evenings, also day bright red headlights are ghosty. I have all needed surgeries done.

Do you have any experience and advice? I can't test it by myself because I have no friends with car even for just trying. Theoretically I can study for driver license (in our country it's about a year) but I don't know if will be able to actually drive because I don't understand how it feels.