I am a 31 yo female who was just diagnosed with mild keratoconus. I’m here to learn about others experiences so I can plan and make informed decisions regarding my medical care. I have a 4 month follow up to check for any progression, and if it’s progressing I will do cross-linking. I can tell that my double vision has been gradually getting worse so I am sure that I will. This all started after a tragic second trimester pregnancy loss during my first pregnancy, I started to notice vision changes while I was pregnant, so hormones seem to play a role for me. Can anyone speak to whether their keratoconus remained stable or progressed with pregnancy, either before or after cross-linking? We want to start a family soon and I am hoping this will not affect our plans.

Hi everyone.

I am going on a cruise sometime next year. Im conflicted because I know you arent supposed to wear sclerals in pools or at the beach / water in general. How do people get around this? Wear goggles and hope for the best? Be content being blind while in/around water? This is stressing me out because I really want to enjoy this vacation with my friends. Its my first time on a cruise too.

Just a hopeful note for anyone out there feeling like they’re helpless when it comes to getting their sclerals in. I have pretty small eyes and have no experience with contacts before getting sclerals. The appointment to put them in myself took over two hours. I was feeling pretty defeated for the following week until I saw a post on here about a scleral stand and got myself one and the process went from two hours to one to a half hour and now I can pretty regularly get them both in on the first try! I’ve tried two different ones at my docs recommendation, but both do the trick for me. Check them out if you are struggling and hang in there everyone!! 💙

Hey everyone, just looking for a little bit of advice. I’m getting my crosslinking procedures done in December and my partner wants to go to a show and the last showing is the first weekend of January and it’s a couple hours away. The day before is two weeks after my second eye and I’m wondering how people did with putting their contacts back in the first time. I really want to take her to the show but I’ll need to wear my contacts. Anyone who had it done, did you feel okay wearing them again? Please let me know🙏thank you in advance :)

I just need to whine. If I don't wear makeup, I look like I am not long for this world. I'm always accidentally bumping my lens with the eyeliner crayon or the mascara wand.

But I can't see to put my makeup on without my lenses without looking like something out of the Joker movie franchise.

The struggle is real.

I'm trying to make my contacts last about 14 to 16 hours a day so I can feel halfway normal. I'm wondering if anybody has some tips because it seems like at about 6:00 to 8 hours my eyes start to get really goopy. So I feel the stress about having to budget my time with my contacts. Also it seems like anytime I do something that's out of my routine my contacts seem to fog up worse and it's really annoying. So this holiday because I work nights and I was trying to be up during the day it was kind of rough and it kind of takes a toll on me mentally. I just want to be able to get out of the house and enjoy my family and everything but I feel like it's never going to happen and it's really defeating.

Hi everyone, I'm 35 and have been wearing glasses for the last 10 years. Recently, I developed an eye infection and visited a doctor who ran some tests and diagnosed me with keratoconus. They recommended undergoing C3R (corneal cross-linking). However, I was skeptical, considering possible corporate interests, so I sought a second opinion.

The second doctor performed additional tests, which showed less severe results. They mentioned that keratoconus often stabilizes after age 30 and, if my prescription hasn't changed significantly in recent years, C3R might not be necessary. Instead, they suggested switching to scleral lenses for better vision correction.

I’m reaching out to fellow members and experts who have faced similar situations:

Should I consider C3R or follow the advice to try scleral lenses?

Any personal experiences or insights would be greatly appreciated.

Thanks in advance for your guidance!

Would just like to share some positive personal improvement. Just moved to cleadew to insert my sclerals. I could honestly cry how much better using this product has been for me. It feel easier to insert my lenses. Eyes feel so much better/comfier throughout the day and when I removing the lenses at the end of day I don’t feel that burning sensation I’ve had in the past. I’ve always suffered with dry eyes - feel like I’ve tried everything with all the types of lenses/products etc. just feel this is a game changer for me and I’m only a week into using cleadew.

My husband got diagnosed today. I feel the physician who diagnosed him was too matter-of-factly about it "you have keratoconus, we can do corneal cross-linking, follow up in 4 months, book an optometrist in our clinic". Didn't really discuss much of the options, or the prognosis, or what to expect.

He's an emotional wreck right now, worried he will continue to get worse to the point of going blind, just really disappointed and depressed. I don't know how to really support him at this time, in terms of being hopeful.

Hey, I am a 31 F and was just diagnosed with early keratoconus by my optometrist this month. I had topography done to confirm. I live in Somerset county NJ and am looking for an opthamalogist to do crosslinking procedure if I end up being a candidate. There are a decent amount of places that offer crosslinking nearby. If any one had any great experiences with Epi on crosslinking at a NJ facility and has any recommendations please let me know! Thank you.

Hey guys , recently i started observing that my new scleral Lens doesn't work as good as my previous one . The previous one would help me see from 6 benches from the board but now I can't see anything after 3rd bench sometimes even 2nd . However whenever I go to my doctor my vision with scleral lens somehow improves a lot.Is it because of KC or a ill fitted scleral lens

Hi there I was wondering if anyone can recommend a practitioner in Adelaide, South Australia who provides Scleral lenses.

Hello everyone,

I was wondering if it is normal that there is a red circle when I remove my scleral at the end of the day ? Is it bad ?

No idea if it could be linked but I am a developer so I do spend most of my day on bright screens.. Also got CXL on that eye.

Thanks !

I hope everyone is doing well. I wanted to share a challenge I’ve been dealing with lately, as I think many might relate or have some helpful advice.

I have Keratoconus, a condition that impacts my vision, and it’s making night driving or driving in the rain incredibly difficult. The glare from oncoming headlights and the way the light scatters due to my astigmatism create a lot of visual discomfort. It not only hampers my ability to see clearly but also raises my anxiety while driving.

I always wear my glasses, but they can’t fully correct the astigmatism caused by Keratoconus. I even tried anti-glare glasses, but unfortunately, they haven’t made a noticeable difference, especially when it comes to the intense glare from headlights.

It’s becoming a real challenge, and I’d love to hear if anyone else has experienced this or has found solutions that work. Have you tried any specific lenses, treatments, or tips for dealing with driving at night with Keratoconus?

Thanks in advance for any advice or support you can share. Stay safe, and take care!

Why do I feel like Scleral lenses are increasing my confidence, which is not necessarily a good thing, because I just use one for my left eye.

And now I am forced to put it on, every time I move out, I fear this is creating a dependency.

Do you also face the same issue?

I heat it up in the microwave so it’s a little warmer, my doc says I cane use the same opened bottle for 48 hours, but idk if I can re-heat it for the next day

Does anyone else have issues while watching movies at the theaters? At first I thought I maybe got salt in my eyes from popcorn but after strictly not touching my face and putting eye drops I noticed my eyes couldn’t stand any bright scenes (like scenes that were in daytime) and my contacts began to get a cloudy image over them.

I was never one to experience issues staring at monitors when I don’t wear my contacts.

Just curious if this happens to anyone else or if there’s an explanation

My eye doctor is close till Monday and I need some Saline solution. Where do yall buy it? He sells me the oens in the pink container

Hey folks, I'm newly diagnosed and am hopeful that cross linking will stop progression. Has anyone had this done after corrective surgery? I got PRK 9 years ago, it fixed my vision for about 4 years but it has been degrading rapidly since. I always knew I had an irregular astigmatism but was recently diagnosed with keratoconus and am freaked out about it. I'm 36 so late to the game. I am still waiting for my specialist appointment.

I am worried there won't be enough cornea for the surgery, would love to hear if others have had success slowing progression with CXL after corrective eye surgery.

I was just Diagnosed an hour ago I'm 22yr old male. I currently drive truck for Pepsi and have a class A CDL. My right eye has minor signs of KC that they want to monitor so I'm going back in 6 months to have that checked. My left eye from what I was told is just enough that they would do a CXL. They are currently going through the approval process to make sure my insurance will cover the surgery.

I didn't realize how bad my eyes were because I have always worn my glasses from the minute I wake up to the moment I go to sleep. I couldn't tell that my eye sight was declining that much. There was a warning sign that I just completely ignored though and I feel stupid for not doing anything about it. I had just gotten my permit for my cdl and was going in to do the medical exam where they tested my eye sight. About a month before this I had gotten my new glasses prescription. The girl had asked me when the last time I got my eyes checked was. I told her about a month ago. She said my eye sight was SHIT and that they were barely good enough to pass me on my exam.

My main concern with getting this surgery is that I won't be able keep my job and my eyes will get worse. Ive already read some horror stories in my short time resarching this stuff. I also feel like I didn't get a whole lot of information from the doctor and there was more I should know about doing this. If anyone has any helpful information or advice to help me form a decision that would be amazing.

Hi all,

Just some questions about caring for my eyes.

In the morning, my eyes are so dry and there's gunk beneath them. At the end of the day, they're sore and the left one weeps for most of the day.

I'm using Patanol (aka Pattaday) after reading about it on this forum.

I also use an eye cream before I go to bed at night, one with vitamin A and another called Siccaforte.

With the Boston products, after about 6 hours of wear, I get fogginess. I use Boston rewetting drops to lubricate the lens before insertion. I'm using Thealuz drops with hydraulic acid for lubrication and Omega 3 drops.

I bought ClearCare, following the recommendation on this forum, but my lens doesn't fit in the kit that you use to clean the lense. I think I need a larger one for my sclerals? Part of the lens doesn't fit in. Noone mentioned this type of cleaning for sclerals to me.

My opthamalogist is booked up to June next year and prescribed me Ceque but my left eye weeped all day and was red when I used it the first time. Do you think I should try it again?

Unfortunately it's too late for cross-linking. My right eye has advanced KC and my left is medium KC.

Thanks in advance for your help and guidance.

I’ve been using Clear Care on my scleral lenses for the past month and it doesn’t seem to break down overnight. Minimum 8 hours. I rinse the lenses with saline and then fill and insert and my eyes are on fire. It’s happened multiple times. Anyone else having this issue? This isn’t sustainable. Would welcome advice from those who have been at it a while! Thanks!

So I drove to my mom's house tonight (Wednesday) for thanksgiving and I forgot my tangible solution that I store my sclera lens in. My brother in law has regular preservative solution. Would it be safe to store it in that for 6hrs just so I can wear it tomorrow? If not I would then have to drive 30min back home to my apartment to get my solution and it would hav to soak for at least 6hrs so I basically can't wear it for thanksgiving.

Thanks,

Hey folks, I was recently diagnosed with corneal ectasia. My doc isn't sure if it is keratoconus or a result of my PRK surgery in 2009. I had an astigmatism before the surgery and was at the edge of what they could do at the time. My prescription is changing rapidly year to year and I can no longer wear soft lenses. Has anyone had success with CXL after PRK or LASIK? I won't see a specialist for a few more weeks.

So I told my doctor that I still have significant light distortion even with my sclerals and he said "well yeah, it's because you have giant pupils"

Brother WHAT

I have 20/400 on my left eye keratoconus.

I have done Crosslink etc

1. I gone to USA, avtlens and tried eyeprint lenses that take eye mold. Afte 9 months i see very good about 7/10. But the problem is that as time passes i have more and more rednesss, discomofort, shollen eye and cannot wear the lens every day. i will send them back the lens to usa and they maybe make some changes and send me an new.
2. Middlewhile , i check bostonsight lenses, but they are not with custom mold. I ask them what they can do.
3. In 3 days i go to netherlands for custom glasses. 

So, i will have an backup

4. At the same time , i asked about CTAK and consider make it in one usa clinic dr peter

5)Lasortan drops

6. What others drops can i take when i have eye discomfort? i take thealoz

I need you opinion if anyone have done CTAK and if it is any risk ?

Within these 7 days i will be sure for my next move.

i have tried all possible solutions and i want to do also by your side the same.

Thank you.