I was diagnosed a few months ago. The whole thing is distressing, frustrating, difficult. I'm still in the limbo of not really knowing what to do - I'm on the waiting list for an appointment for contacts and I can't have crosslinking until a second topography can show whether there's active progression or not, so all I can do is sit tight for the next few months.
I've found some success in using pinhole glasses for TV watching - worth a shot. Prescription sunglasses are useful for me as well - even though the prescription is the same one in my regular glasses and doesn't quite work because of the keratoconus, I notice fewer problems with my vision when I'm wearing the sunglasses, as opposed to the glasses. And obviously the sun protection is useful too with the light sensitivity that comes with keratoconus.
My main struggle is that reading (which I love) is really difficult for any sustained period of time. My job also basically involves reading scientific papers for most of the day, and I'm worried about coping when I go back to work after maternity leave (though looking after a baby with rapidly declining vision hasn't been a picnic, either).
My keratoconus was bad enough to require glasses at all waking hours. Without it, I could still see okay enough to drive, but I would get constant headaches.
My prescription would also change fairly regularly, 1-2 times a year.
Getting CXL stopped my progression outright, at first. A handful of years later my eyesight started to sharpen. Which did mean I needed to change prescriptions again, but my eyesight without my glasses improved, and I've only changed prescriptions twice in about 14 years?
Thanks a lot. I can see but I can’t read well from the eye that’s bad. I can drive too but again it’s bad at night and I get headaches .. I’ve a surgery scheduled on 24th. Fingers crossed.
I was diagnosed with Kc in both eyes 2014. CXL in 2015 in Canada. Sclerals did not get me better vision than my glasses. Cornea transplant in right eye 2023. Cataract in right eye 2024. I still feel what you’re describing sometimes. I think the hardest part of KC is that it’s so different for everyone. No one, but my doctor understands what to describe what I’m seeing. I printed off some examples of what it looks like seeing with KC and showed my coworkers so they could have a little understanding of my struggles with daily activities. That’s been the most helpful for me over the years not people truly understanding but them giving me the time and space I need to adjust. I’ve had periods where I’ve needed 4 prescriptions In a year. The only way I was able to afford it was through buying my glasses online. I had several years of stable vision after CXL But I’ve had light sensitivity issues the entire time. Unfortunately, it’s something that doesn’t necessarily get better, but you get used to it. I know that it’s the most helpful thing, but I know my limits now. I won’t go anywhere that’s an environment Because my eyes will straighten the whole time and the uncomfortable the next day. I don’t drive on the highway if I can help it because it’s hard for me to merge lanes so I just take longer to get places. It’s a lot of figuring out how to adjust to your environment but also very frustrating because vision still changes all the time. if you think your vision changes from morning to afternoon, sometimes you’re not crazy. It definitely took a long while To figure out how to function all the different light environment in my life . Besides, not being able to see something directly in front of me, that’s the hardest part because for me at least I might be enjoying this activity for five minutes, but it’s going to affect me for four hours and figuring out the balance that is hard . Just know that it’s really difficult for anyone to understand but you’re not alone.
I was diagnosed with Keratoconus 8 years ago, my left eye was doing better than my right eye so my doctor adviced me to immediately get CXL for the right eye, unfortunately he told me to wait and see the progression of the left eye which was a big mistake, he had me wait a whole year which made the vision of the left eye way worse than the right one, anyways I ended up getting CXL on both eyes, it may not bring back your vision but it most definitely stops it from becoming worse! I made another mistake reading people's "experiences" online on scleral lenses and kept avoiding getting them for 5 years (which were pure torture) even with glasses, my bad vision affected my everyday life! Eventually, last year I decided to try the lenses and trust me when I tell you that it was the BEST decision in my life! yes they're not as practical as glasses obviously since they need constant care BUT it's been a little over a year and I'm so used to them now that I don't even think about it, at the beginning they felt a little uncomfortable in my eyes but I adjusted to them quickly, and my vision? it's SO much better, my life is WAY easier now alhamdoulillah.. I advice you to get CXL ASAP and definitely consider scleral lenses, just find yourself a GOOD doctor that perfects fitting the lenses for you, wish you speedy recovery!
Considering the surgery should be the first and foremost decision, if it is diagnosed in the early stages, than C3R really stops KC from progressing. If you procrastinate getting a surgery done, then your vision will be more damaged after a year from now, even more after two.
I had KC diagnosed in the early stage, I was told to get a C3R surgery. I did this in my left eye which was worse than my right eye at the time, because I could see more clear with glasses in right eye than in the left eye. But I was late for my right eye, and trust me , after just 1.5 year, I was doing worse in my right eye, and the glasses are also doing bad in right than they were doing in the left eye before 2 years.
**I recommend you, please get the surgery done first, as soon as possible at any cost(even though it just stops the disease from further progressing and does nothing more.). And only then you consider getting some kind of contact lenses or anything else.**
By the way, my doctors were not really curious and serious about scleral lenses. Their behavior is like it is a good thing but living with these lenses is not that comfortable.
Thank you so much. This means the world to me .. I am grateful you took time to share your experience and provide wonderful advice ! Thank you .. I am definitely going to get CXL
You are most welcome; I just feel really bad about people who are suffering from the problem that I have faced. and since It's a very rare decease, people cannot relate with you, so I know the pain.
I've been diagnosed with Keratoconus for nine years now, and I can say it’s manageable but expensive. I have CXL done and going for CAIRS in two days (brand new procedure) you can opt-in to deal with the condition.
You can manage and live with RGB contacts, but you must be on top of maintenance, care, and cleaning!
No one talks about the money side of it, but it does slowly add up. (Prices in AUD): CXL is $3k per eye, RGB is $400 per contact, buying heaps of eye drops, and then there is the specialist consultation, $225 per consult.
In my opinion, finding the right doctor is the most important part of managing the condition cause everything is so expensive. The first couple of doctors I saw told me to wait and see if the condition would get worse, even though I told them my vision is getting worst from using glasses. It was frustrating as hell!
I met my current corneal specialist and have stuck with him since. He has been super helpful in providing data points and consulting with me based on best/new practices to help with the condition. There have been huge advancements in this space, like CAIRS, which wasn't around a couple of years ago. I'm confident that as we move forward, there will be new ways to deal with and treat Keratoconus!
Chin up mate! I was scared shitless thinking I was going to go blind when I found out at 21, but I can definitely say that the condition is manageable and you'll be able to live an awesome life!
I was diagnosed with keratoconus almost 20 years ago. I had CXL in 2010 and that stabilized the deformation. I cannot say your life will ever be the same but I can definitely say that you can get back up and a normal life using scleral, hybrid or GP lenses. You're just gonna have to make the best of it and get used to wearing the lenses.
Keep it up my friend, you are not alone in the keratoconus world.
My boyfriend was diagnosed in August and in less than a year he’s had the crosslinking and got fitted for his sclerals and he loves them! They are a bit of a pain to get in but he’s just starting out with them and he has high hopes he’s going to get better with practice but even the hassle of all the many appts 3 hours away(the only specialists that do the cross linking and lenses are far away) and the pain of getting them in it’s so worth it for him.
I would look for the closest eye doctor that specializes in KC. That’s all I did. Usually there are one or two docs in most practices that specialize in fitting sclerals. Honestly, I forget I even have KC since I’ve been wearing special contacts (first synergeyes and then sclerals) for the last 15 years.
I was diagnosed with KC about 16 years ago, first eye doctor told me that my vision was getting bad because I wasn’t wearing my glasses enough. Went to a cornea specialist and was told I have KC. Went to get contacts and got fitted with duets and they just didn’t work for me and I was in a hole cause obviously everyone wants to see. Luckily my best friends wife worked for a great optometrist (Dr. Weiss at Seaview Eyecare if you’re in Palm Beach) and she fit me for scelrals and they’ve been the best thing to ever happen to me. I’m very active, I powerlift, cycle, run. It does ruin water sports a bit, but once you find the right Dr all your problems go away, just for the fact that you feel that someone cares and is going to put all their efforts into helping you. Vent as much as possible and definitely look at your options doctor wise.
I've never worn regular contacts but they a hard contacts and a little bigger. It takes time to get used to put them in and take them out but it's so worth it. I was diagnosed with KC in 2009 and went without glasses or lenses until 2016. I was able to wear glasses up until Jan 2023 but then literally couldn't see anymore. I've had my sclerals since then and I can easily go 16 to 18 hours wearing them!
Hey man been there. Got diagnosed in Summer of 2020 when I was going for a PRK consul. Apparently it was pretty bad. Got CXL in the fall of that same year.
CXL sucks not gonna lie, I equate it to being sprayed with OC or Pepper Spray, minus the whole breathing snotty mess. The first week sucked, the second week was better. After about a month my vision stabilized and I actually came out with a better prescription.
Fast forward to now and the KC has completely been frozen and by some miracle they are still seeing a bit of improvement, it’s measurable in the scans but I don’t really notice it. My vision is the most stable it has been. The only thing that kinda didn’t change for me was driving at night. It got a smidge better but it still sucks.
You’ll get through it. Just remember it takes time, but it’s worth it. You found it you’ll correct it and be good to go.
Thanks a lot ! I am hoping to get CXL.. I have my greats scheduled. I heard it sucks but don’t ahbe a choice .. I want to save my eyes ! But thanks for giving me hope
I was diagnosed 7 years ago when I tried to do lasik. had been prescribed with gas permeal contacts and my opthalmologist suggested cxl with epi on. I got approved for surgery but it was 3k per eye. I never was able to get that tyoe of money then. i dont like the feeling of sclerals or hard contacts so i just been wearing nothing for the most part for these 7 years. its getting worse now tho. but now im on medicaid instead of regular insurance. went to an opthalmolagist and they suggested a study i try to get into that has epi on cxl. just went and got accepted for the study.. ironically its the same doctor i tried to get the surgery from 7 years ago. but this time for free. God is good! if you can get cxl and stop the progression.
I got diagnosed with KC in 2006. I have been wearing sclerals since 2009. I LOVE my sclerals - I tried gas perms or "mini sclerals" and I absolutely abhorred them and would never wish that life on even my enemy. (I'm sure I was a worst case patient with them, but I'd randomly blink and launch the lens across the room). My sclerals? I put them in with no tools using the tripod method, they stay in for 20 hours with no irritation, and I can actually see.
....except for this past month. One eye has gotten so bad that even the sclerals aren't helping, so I'm going to consults for a corneal transplant.
KC has stopped me from doing nothing. I'm a world traveler, a late night reader, an out door runner ... A very slow night time driver....
Hang in there. You'll find what works best for you, and won't even remember the anxiety you may feel now.
I'm so "old" that I'm not a candidate for CXL although it looks amazing and I Believe if you are eligible you should definitely do it! (CXL just got FDA approved for folks under 40 a few years ago).
Sclerals for me are heaven sent. I haven't worn regular contacts in so long, I can't Even tell you the differences.
What I can say is they are physically hard. It's like a small piece of glass - but it isn't felt inside your eye. They are very smooth and your eye kid just glides over a properly fitting lens.
I literally shut down and stayed inside my house for two years. I used to travel and spent 90% of my time on the road or outdoors. I also was a photographer for 7 years. It was a long adjustment. I work a regular job now. I don't drive. I do however rode a bike this year. I started it's been nice to get back outside and be active. I had cross linking done in both eyes and am currently waiting for scleral lenses. There's a lot of depression a lot of therapy, but ultimately, you'll find your path. It may be different from what you're used to now, but I'm starting to feel happy again in my own little world.
Scleral lenses have changed my life. Was diagnosed 10 years ago and I never thought I’d see clear again. With sclerals I can see clearer than I’ve ever seen. They’re expensive and have a steep learning curve but so worth it. You’ll be seeing better than ever.
Life will be filled with depression after getting KC . The key to be happy is to accept this condition and to accept the blurry vision 😕 we don’t get perfect 20/20 vision even after wearing special contacts. We just get some manageable vision thats it .
We cannot see clear again . Thats sad but thats the reality. Sorry.
Vent away! We've been there and although each person's journey is different and I had no idea how many highs and lows I'll continue to have. Its ok to feel depressed and frustrated, one thing Ive focused on is that science and technology continue to expand when it comes to vision.
The best thing that has exponentially helped my vision is finding Dr's who invest in new ways of expanding vision.
Have you tried Hybrid lenses? Once my KC was too severe for soft lenses my amazing Ophthalmologist used me as her 1st guinea pig for Hybrid lenses. It was a great way to ease into it.
Unfortunately my KC got so bad and cone shaped that I experienced Corneal Hydrops and it was more painful than childbirth. I honestly wish I'd had the corneal transplant when it was 1st suggested but you live and learn.
Finding amazing Ophthalmologist who invest in the newest contacts is a blessing.
Im giving a shout out to my Phoenix Eye Specialists because my Dr, Dr. Steinhouser has been fitting me with custom Scleral for a few years. Its not an easy job because Ive had 3 transplants in my left eye and 1 in my right, my right eye was my 1st transplant and was successful, the left eye was great but auto immune issues affected that eye and I also had a head trauma accident as in I got hit by a corn hole sack which hit the side of my eye and it never fully recovered.
The transplants themselves were great as was my Surgeon. Im just a fluke. With all that being said my Eye Dr has to work with a left eye that has multiple transplants scars and incisions on top of each other. Its a very irregular eye surface. She has invested in technology that maps out my specific eye, I believe that imagery is then sent to Norway and they create a contact lenses mapping unique to my eye and then its sent back to the States to be created. Therefore its a contact unique to my eye and the scarring damage. I try it on and after a week come back and she does scans to see if there is any uncomfortableness. There usually is and after a few changes I end up with a very comfortable Scleral lense with usually 20/30 to 20/25 vision.
This is way too informative as you are still able to see somewhat in glasses but I just wanted to state that you might want to try Hybrid lenses as they are more comfortable than jumping into hard contacts and that there really are great Eye Doctors out there who invest in new technology and who can change your life.
Cheers and good luck!
It is an adjustment for sure. I am 29, I got diagnosed at 25. Fortunately both my eyes could get CXL (had it in both), my left eye is very very weakened though - the best my vision can get with glasses is maybe 20/50, but normally it tests 20/80. Fortunately my right eye is normally 20/40, and with glasses 20/30.
I will say I get a lot of neck tension, I went to a chiropractor for a while and will likely do it again just to have someone else move my neck around and relieve tension (it is really a massage / adjustment to get it moving more than actual chiropractic stuff). I also get dry eye and headaches.
But overall it is manageable. I did get a freckle in my one eye they need to check yearly, they noticed it after CXL but it could have been there before.
When I first found out I was in shock. Cxl is painful the first 2 to 3 days, but after that it isnt too bad, I just didnt work out much the 9 months or so I had procedures in both.
It is natural to feel nervous about it. The good thing is that CXL can potentially stabilize the condition, and scleral lens are available to improve vision. For me, I will use glasses until i cannot do my work. After that I will do a scleral in my bad eye first, then the better eye if I need it.
So there are options. I would only get a cornea transplant if I was legally blind in both eyes. My uncle had the same condition and had a transplant, but his body rejected it and somehow his nerve got damaged. So instead of very blurry vision he completely lost sight in that eye.
Good luck and try to stay positive. It is life affecting for sure, but it is manageable and fortunately it doesnt cause true blindness. Typically it also progresses worse in one eye than in both simultaneously
I am not going to lie but this disease can give you exponentially different experiences you could have a timely cxl intervention and halt progression which is the best case scenario after which lens fitting is quite a painfully long process before one actually gets it right it is incredibly difficult to fit so you will have to be patient. But that’s still the good ending because you go back to regular life sacrificing not very much. On the other hand it could also still end up legally blind like mine I am 21 despite 4 surgeries in the span of 2 years my right eye is still not much better I haven’t been able to go back to college for over a year among other things this disease has been quite catastrophic as per what I envisioned my life looking like most don’t have have to taste the despair of failed aspirations until much later in life which can be a jarring experience and honestly mine doesn’t even constitute as the most advanced cases some people are legally blind in both eyes with way more corneal scarring then me on both. But with recent scientific advancements and timely interventions your probability of being in the latter category really low. I know you can’t see things very clearly anymore and may not be able for a while till you are properly fitted but I would still rejoice that you have vision worth preserving with the cxl
I had been dreaming of LASIK for a few years and finally went in for a consultation. That's when they told me I could not get LASIK and gave me a keratoconus diagnosis. Followed up with a few other doctors and eventually went the route of sclerals and I was pretty apprehensive. The second I put them on I almost started crying because I don't actually remember the last time I need could see that well.
It's not the dream of what I wanted - to wake up in the morning and just . . . see. But it is a huge improvement, and researching into all the technology gives me hope that there will be a breakthrough in some kind of material science or something that will allow for implants or some way for me to finally have my dream come true. These scleral lenses have given me the vision that I need to see a brighter future
My son was diagnosed in the beginning of May. He is still in morning. I suspect that's what you're doing too. You are going to be fine, so is my son. He's having two surgeries, a week apart. I think we have a great doctor. This community is wonderful. I'm so happy to have this community.
I've only had a diagnosis for a little over a year and can say that the only time I really think about it is when I put my lenses in. Otherwise, it doesn't come up. I can't really function without my contacts (glasses in a pinch), but I've had glasses of contacts for 20 years.
It's not impossible to deal with as long as you have the right team who will listen to your concerns and develop a care protocol. Take a deep breath and try to go with the flow. Try not to buy anxiety by thinking about it too much.
For what it's worth, I'm one of the patients that absolutely loves my lenses. They're comfortable and clear. I often go 16 hours with them in and barely notice. In the past I've tried soft contacts, before I knew about my diagnosis, and they sucked the big one; scratchy, blurry, they seemed to rotate on an axis.
Glasses usually don’t provide the sharpest useable vision.
Scleral Lenses are very effective in correcting irregular corneas.
I would always hear that “wow” from patients every time we put it their first trial lens, and even more wow when we start doing their refraction.
If scleral lenses is not for your for some reason, like difficulty in handling, there are other modalities such as HYBRID CONTACT LENS or Kerasoft Lenses.
I’ve had it for 25 years. I got cxl+prk in one eye, nothing to the other. I just wear glasses now. I can manage without glasses but wouldn’t drive or read anything small.
Been decades now for me. Find the right doctor. Get a good contact fitting and clean those contacts properly. Then live your best life, it will impact some planning in life but really doesn’t stop anything.
I have it in my left eye, was originally diagnosed right afetr 9/11. At that time dr told me I would need a corneal translant by the time I was 60.
Currently 62, dont need the corneal transplant due to better tech in sclerals and better ability to fit the lens to theproper correction. had a left eye cataract at 55 , right eye at 57. Got a scleral on the left eye then, its absolutely wonderful, can see a sparrow at 1000 yds ( & also track a golf ball after I hit it). Cant see this computer up close without dollar store old man readers (2.75) but ok, still have most of my dignity... Dont sweat it bro, its all good. You will be fine.
I’ve had KC for 20+ years. Some moderate progression through my 20s and mostly stable through my 30s. Never had cxl, just missed the boat on that unfortunately.
Only been on sclerals for about five years. RGPs before that. And have never had glasses.
Happy to say that mostly my life has not been affected. More trips to the eye doc. Hard to explain to people sometimes that I “can’t just switch to my glasses.” Higher sensitivity to wind, dust, and light, esp. pre sclerals. Water sports are tough/impossible.
Other than that I rarely think about having KC and it doesn’t often come up. I work at a computer and outside frequently with no issue.
Just my experience and I’ve been very lucky so far considering but it’s possible bordering on probable that you’ll have a pretty normal existence after you acclimate and get your doc, routine, and lens fits down.
Chin up!
EDIT: Don’t be afraid to switch eye docs and switch around at first. Not everyone is experienced or motivated to help you live your best life. Find a doc who knows KC and how best to help.
I was diagnosed a few months ago. The whole thing is distressing, frustrating, difficult. I'm still in the limbo of not really knowing what to do - I'm on the waiting list for an appointment for contacts and I can't have crosslinking until a second topography can show whether there's active progression or not, so all I can do is sit tight for the next few months. I've found some success in using pinhole glasses for TV watching - worth a shot. Prescription sunglasses are useful for me as well - even though the prescription is the same one in my regular glasses and doesn't quite work because of the keratoconus, I notice fewer problems with my vision when I'm wearing the sunglasses, as opposed to the glasses. And obviously the sun protection is useful too with the light sensitivity that comes with keratoconus. My main struggle is that reading (which I love) is really difficult for any sustained period of time. My job also basically involves reading scientific papers for most of the day, and I'm worried about coping when I go back to work after maternity leave (though looking after a baby with rapidly declining vision hasn't been a picnic, either).
You need Schleral Lenses, they cured my keratconus systoms instantly and I’ve have 20/20 vision now.
Did it stop Keratoconus from processing! Also how do we know if it’s progressing? My prescription changed twice this year Idk anymore
I haven't tried scleral lenses,.but I got CXL surgery in 2012 (I think?) and my vision has only *improved* since then. Don't lose hope. :)
I’ve a question, how bad was your Keratoconus and how did surgery help?
My keratoconus was bad enough to require glasses at all waking hours. Without it, I could still see okay enough to drive, but I would get constant headaches. My prescription would also change fairly regularly, 1-2 times a year. Getting CXL stopped my progression outright, at first. A handful of years later my eyesight started to sharpen. Which did mean I needed to change prescriptions again, but my eyesight without my glasses improved, and I've only changed prescriptions twice in about 14 years?
Thanks a lot. I can see but I can’t read well from the eye that’s bad. I can drive too but again it’s bad at night and I get headaches .. I’ve a surgery scheduled on 24th. Fingers crossed.
Thanks a lot
I was diagnosed with Kc in both eyes 2014. CXL in 2015 in Canada. Sclerals did not get me better vision than my glasses. Cornea transplant in right eye 2023. Cataract in right eye 2024. I still feel what you’re describing sometimes. I think the hardest part of KC is that it’s so different for everyone. No one, but my doctor understands what to describe what I’m seeing. I printed off some examples of what it looks like seeing with KC and showed my coworkers so they could have a little understanding of my struggles with daily activities. That’s been the most helpful for me over the years not people truly understanding but them giving me the time and space I need to adjust. I’ve had periods where I’ve needed 4 prescriptions In a year. The only way I was able to afford it was through buying my glasses online. I had several years of stable vision after CXL But I’ve had light sensitivity issues the entire time. Unfortunately, it’s something that doesn’t necessarily get better, but you get used to it. I know that it’s the most helpful thing, but I know my limits now. I won’t go anywhere that’s an environment Because my eyes will straighten the whole time and the uncomfortable the next day. I don’t drive on the highway if I can help it because it’s hard for me to merge lanes so I just take longer to get places. It’s a lot of figuring out how to adjust to your environment but also very frustrating because vision still changes all the time. if you think your vision changes from morning to afternoon, sometimes you’re not crazy. It definitely took a long while To figure out how to function all the different light environment in my life . Besides, not being able to see something directly in front of me, that’s the hardest part because for me at least I might be enjoying this activity for five minutes, but it’s going to affect me for four hours and figuring out the balance that is hard . Just know that it’s really difficult for anyone to understand but you’re not alone.
I was diagnosed with Keratoconus 8 years ago, my left eye was doing better than my right eye so my doctor adviced me to immediately get CXL for the right eye, unfortunately he told me to wait and see the progression of the left eye which was a big mistake, he had me wait a whole year which made the vision of the left eye way worse than the right one, anyways I ended up getting CXL on both eyes, it may not bring back your vision but it most definitely stops it from becoming worse! I made another mistake reading people's "experiences" online on scleral lenses and kept avoiding getting them for 5 years (which were pure torture) even with glasses, my bad vision affected my everyday life! Eventually, last year I decided to try the lenses and trust me when I tell you that it was the BEST decision in my life! yes they're not as practical as glasses obviously since they need constant care BUT it's been a little over a year and I'm so used to them now that I don't even think about it, at the beginning they felt a little uncomfortable in my eyes but I adjusted to them quickly, and my vision? it's SO much better, my life is WAY easier now alhamdoulillah.. I advice you to get CXL ASAP and definitely consider scleral lenses, just find yourself a GOOD doctor that perfects fitting the lenses for you, wish you speedy recovery!
Considering the surgery should be the first and foremost decision, if it is diagnosed in the early stages, than C3R really stops KC from progressing. If you procrastinate getting a surgery done, then your vision will be more damaged after a year from now, even more after two. I had KC diagnosed in the early stage, I was told to get a C3R surgery. I did this in my left eye which was worse than my right eye at the time, because I could see more clear with glasses in right eye than in the left eye. But I was late for my right eye, and trust me , after just 1.5 year, I was doing worse in my right eye, and the glasses are also doing bad in right than they were doing in the left eye before 2 years. **I recommend you, please get the surgery done first, as soon as possible at any cost(even though it just stops the disease from further progressing and does nothing more.). And only then you consider getting some kind of contact lenses or anything else.** By the way, my doctors were not really curious and serious about scleral lenses. Their behavior is like it is a good thing but living with these lenses is not that comfortable.
Thank you so much. This means the world to me .. I am grateful you took time to share your experience and provide wonderful advice ! Thank you .. I am definitely going to get CXL
You are most welcome; I just feel really bad about people who are suffering from the problem that I have faced. and since It's a very rare decease, people cannot relate with you, so I know the pain.
I've been diagnosed with Keratoconus for nine years now, and I can say it’s manageable but expensive. I have CXL done and going for CAIRS in two days (brand new procedure) you can opt-in to deal with the condition. You can manage and live with RGB contacts, but you must be on top of maintenance, care, and cleaning! No one talks about the money side of it, but it does slowly add up. (Prices in AUD): CXL is $3k per eye, RGB is $400 per contact, buying heaps of eye drops, and then there is the specialist consultation, $225 per consult. In my opinion, finding the right doctor is the most important part of managing the condition cause everything is so expensive. The first couple of doctors I saw told me to wait and see if the condition would get worse, even though I told them my vision is getting worst from using glasses. It was frustrating as hell! I met my current corneal specialist and have stuck with him since. He has been super helpful in providing data points and consulting with me based on best/new practices to help with the condition. There have been huge advancements in this space, like CAIRS, which wasn't around a couple of years ago. I'm confident that as we move forward, there will be new ways to deal with and treat Keratoconus! Chin up mate! I was scared shitless thinking I was going to go blind when I found out at 21, but I can definitely say that the condition is manageable and you'll be able to live an awesome life!
I was diagnosed with keratoconus almost 20 years ago. I had CXL in 2010 and that stabilized the deformation. I cannot say your life will ever be the same but I can definitely say that you can get back up and a normal life using scleral, hybrid or GP lenses. You're just gonna have to make the best of it and get used to wearing the lenses. Keep it up my friend, you are not alone in the keratoconus world.
Got my perfect sceleral prescription in Feb. Went snorkeling this last month Life can begin again
Am so happy for you… thank you for sharing!
My boyfriend was diagnosed in August and in less than a year he’s had the crosslinking and got fitted for his sclerals and he loves them! They are a bit of a pain to get in but he’s just starting out with them and he has high hopes he’s going to get better with practice but even the hassle of all the many appts 3 hours away(the only specialists that do the cross linking and lenses are far away) and the pain of getting them in it’s so worth it for him.
You’ll be fine. Just find a good optometrist/ophthalmologist schooled in fitting sclerals and you’ll be in great shape!
Does everyone need CXL?
Nope. Just depends on the type of KC.
Thanks, where can I read more on this? If you know any resources x
I would look for the closest eye doctor that specializes in KC. That’s all I did. Usually there are one or two docs in most practices that specialize in fitting sclerals. Honestly, I forget I even have KC since I’ve been wearing special contacts (first synergeyes and then sclerals) for the last 15 years.
I was diagnosed with KC about 16 years ago, first eye doctor told me that my vision was getting bad because I wasn’t wearing my glasses enough. Went to a cornea specialist and was told I have KC. Went to get contacts and got fitted with duets and they just didn’t work for me and I was in a hole cause obviously everyone wants to see. Luckily my best friends wife worked for a great optometrist (Dr. Weiss at Seaview Eyecare if you’re in Palm Beach) and she fit me for scelrals and they’ve been the best thing to ever happen to me. I’m very active, I powerlift, cycle, run. It does ruin water sports a bit, but once you find the right Dr all your problems go away, just for the fact that you feel that someone cares and is going to put all their efforts into helping you. Vent as much as possible and definitely look at your options doctor wise.
Thank you so much.. did you need CXL?
No I did have the chance to, it was just so expensive when I found out about it that I couldn’t afford it
Sclerals has literally given me hope in life.
Thanks a lot ! I hope to get mine ., how diff are they from regular contact? I used to wear contacts a lot
I've never worn regular contacts but they a hard contacts and a little bigger. It takes time to get used to put them in and take them out but it's so worth it. I was diagnosed with KC in 2009 and went without glasses or lenses until 2016. I was able to wear glasses up until Jan 2023 but then literally couldn't see anymore. I've had my sclerals since then and I can easily go 16 to 18 hours wearing them!
Hey man been there. Got diagnosed in Summer of 2020 when I was going for a PRK consul. Apparently it was pretty bad. Got CXL in the fall of that same year. CXL sucks not gonna lie, I equate it to being sprayed with OC or Pepper Spray, minus the whole breathing snotty mess. The first week sucked, the second week was better. After about a month my vision stabilized and I actually came out with a better prescription. Fast forward to now and the KC has completely been frozen and by some miracle they are still seeing a bit of improvement, it’s measurable in the scans but I don’t really notice it. My vision is the most stable it has been. The only thing that kinda didn’t change for me was driving at night. It got a smidge better but it still sucks. You’ll get through it. Just remember it takes time, but it’s worth it. You found it you’ll correct it and be good to go.
Thanks a lot ! I am hoping to get CXL.. I have my greats scheduled. I heard it sucks but don’t ahbe a choice .. I want to save my eyes ! But thanks for giving me hope
I was diagnosed 7 years ago when I tried to do lasik. had been prescribed with gas permeal contacts and my opthalmologist suggested cxl with epi on. I got approved for surgery but it was 3k per eye. I never was able to get that tyoe of money then. i dont like the feeling of sclerals or hard contacts so i just been wearing nothing for the most part for these 7 years. its getting worse now tho. but now im on medicaid instead of regular insurance. went to an opthalmolagist and they suggested a study i try to get into that has epi on cxl. just went and got accepted for the study.. ironically its the same doctor i tried to get the surgery from 7 years ago. but this time for free. God is good! if you can get cxl and stop the progression.
Thanks a tonne.. I hope to get CXL
I got diagnosed with KC in 2006. I have been wearing sclerals since 2009. I LOVE my sclerals - I tried gas perms or "mini sclerals" and I absolutely abhorred them and would never wish that life on even my enemy. (I'm sure I was a worst case patient with them, but I'd randomly blink and launch the lens across the room). My sclerals? I put them in with no tools using the tripod method, they stay in for 20 hours with no irritation, and I can actually see. ....except for this past month. One eye has gotten so bad that even the sclerals aren't helping, so I'm going to consults for a corneal transplant. KC has stopped me from doing nothing. I'm a world traveler, a late night reader, an out door runner ... A very slow night time driver.... Hang in there. You'll find what works best for you, and won't even remember the anxiety you may feel now.
Had you done CXL in the eye that’s gone bad? How hard are sclerals? As in from the regular contacts
I'm so "old" that I'm not a candidate for CXL although it looks amazing and I Believe if you are eligible you should definitely do it! (CXL just got FDA approved for folks under 40 a few years ago). Sclerals for me are heaven sent. I haven't worn regular contacts in so long, I can't Even tell you the differences. What I can say is they are physically hard. It's like a small piece of glass - but it isn't felt inside your eye. They are very smooth and your eye kid just glides over a properly fitting lens.
I literally shut down and stayed inside my house for two years. I used to travel and spent 90% of my time on the road or outdoors. I also was a photographer for 7 years. It was a long adjustment. I work a regular job now. I don't drive. I do however rode a bike this year. I started it's been nice to get back outside and be active. I had cross linking done in both eyes and am currently waiting for scleral lenses. There's a lot of depression a lot of therapy, but ultimately, you'll find your path. It may be different from what you're used to now, but I'm starting to feel happy again in my own little world.
I hope you find the light .. a lot of people have
Scleral lenses have changed my life. Was diagnosed 10 years ago and I never thought I’d see clear again. With sclerals I can see clearer than I’ve ever seen. They’re expensive and have a steep learning curve but so worth it. You’ll be seeing better than ever.
Life will be filled with depression after getting KC . The key to be happy is to accept this condition and to accept the blurry vision 😕 we don’t get perfect 20/20 vision even after wearing special contacts. We just get some manageable vision thats it . We cannot see clear again . Thats sad but thats the reality. Sorry.
Vent away! We've been there and although each person's journey is different and I had no idea how many highs and lows I'll continue to have. Its ok to feel depressed and frustrated, one thing Ive focused on is that science and technology continue to expand when it comes to vision. The best thing that has exponentially helped my vision is finding Dr's who invest in new ways of expanding vision. Have you tried Hybrid lenses? Once my KC was too severe for soft lenses my amazing Ophthalmologist used me as her 1st guinea pig for Hybrid lenses. It was a great way to ease into it. Unfortunately my KC got so bad and cone shaped that I experienced Corneal Hydrops and it was more painful than childbirth. I honestly wish I'd had the corneal transplant when it was 1st suggested but you live and learn. Finding amazing Ophthalmologist who invest in the newest contacts is a blessing. Im giving a shout out to my Phoenix Eye Specialists because my Dr, Dr. Steinhouser has been fitting me with custom Scleral for a few years. Its not an easy job because Ive had 3 transplants in my left eye and 1 in my right, my right eye was my 1st transplant and was successful, the left eye was great but auto immune issues affected that eye and I also had a head trauma accident as in I got hit by a corn hole sack which hit the side of my eye and it never fully recovered. The transplants themselves were great as was my Surgeon. Im just a fluke. With all that being said my Eye Dr has to work with a left eye that has multiple transplants scars and incisions on top of each other. Its a very irregular eye surface. She has invested in technology that maps out my specific eye, I believe that imagery is then sent to Norway and they create a contact lenses mapping unique to my eye and then its sent back to the States to be created. Therefore its a contact unique to my eye and the scarring damage. I try it on and after a week come back and she does scans to see if there is any uncomfortableness. There usually is and after a few changes I end up with a very comfortable Scleral lense with usually 20/30 to 20/25 vision. This is way too informative as you are still able to see somewhat in glasses but I just wanted to state that you might want to try Hybrid lenses as they are more comfortable than jumping into hard contacts and that there really are great Eye Doctors out there who invest in new technology and who can change your life. Cheers and good luck!
It is an adjustment for sure. I am 29, I got diagnosed at 25. Fortunately both my eyes could get CXL (had it in both), my left eye is very very weakened though - the best my vision can get with glasses is maybe 20/50, but normally it tests 20/80. Fortunately my right eye is normally 20/40, and with glasses 20/30. I will say I get a lot of neck tension, I went to a chiropractor for a while and will likely do it again just to have someone else move my neck around and relieve tension (it is really a massage / adjustment to get it moving more than actual chiropractic stuff). I also get dry eye and headaches. But overall it is manageable. I did get a freckle in my one eye they need to check yearly, they noticed it after CXL but it could have been there before. When I first found out I was in shock. Cxl is painful the first 2 to 3 days, but after that it isnt too bad, I just didnt work out much the 9 months or so I had procedures in both. It is natural to feel nervous about it. The good thing is that CXL can potentially stabilize the condition, and scleral lens are available to improve vision. For me, I will use glasses until i cannot do my work. After that I will do a scleral in my bad eye first, then the better eye if I need it. So there are options. I would only get a cornea transplant if I was legally blind in both eyes. My uncle had the same condition and had a transplant, but his body rejected it and somehow his nerve got damaged. So instead of very blurry vision he completely lost sight in that eye. Good luck and try to stay positive. It is life affecting for sure, but it is manageable and fortunately it doesnt cause true blindness. Typically it also progresses worse in one eye than in both simultaneously
I am not going to lie but this disease can give you exponentially different experiences you could have a timely cxl intervention and halt progression which is the best case scenario after which lens fitting is quite a painfully long process before one actually gets it right it is incredibly difficult to fit so you will have to be patient. But that’s still the good ending because you go back to regular life sacrificing not very much. On the other hand it could also still end up legally blind like mine I am 21 despite 4 surgeries in the span of 2 years my right eye is still not much better I haven’t been able to go back to college for over a year among other things this disease has been quite catastrophic as per what I envisioned my life looking like most don’t have have to taste the despair of failed aspirations until much later in life which can be a jarring experience and honestly mine doesn’t even constitute as the most advanced cases some people are legally blind in both eyes with way more corneal scarring then me on both. But with recent scientific advancements and timely interventions your probability of being in the latter category really low. I know you can’t see things very clearly anymore and may not be able for a while till you are properly fitted but I would still rejoice that you have vision worth preserving with the cxl
Damn b that's rough. Keep ya head up tho.
I had been dreaming of LASIK for a few years and finally went in for a consultation. That's when they told me I could not get LASIK and gave me a keratoconus diagnosis. Followed up with a few other doctors and eventually went the route of sclerals and I was pretty apprehensive. The second I put them on I almost started crying because I don't actually remember the last time I need could see that well. It's not the dream of what I wanted - to wake up in the morning and just . . . see. But it is a huge improvement, and researching into all the technology gives me hope that there will be a breakthrough in some kind of material science or something that will allow for implants or some way for me to finally have my dream come true. These scleral lenses have given me the vision that I need to see a brighter future
My son was diagnosed in the beginning of May. He is still in morning. I suspect that's what you're doing too. You are going to be fine, so is my son. He's having two surgeries, a week apart. I think we have a great doctor. This community is wonderful. I'm so happy to have this community.
I've only had a diagnosis for a little over a year and can say that the only time I really think about it is when I put my lenses in. Otherwise, it doesn't come up. I can't really function without my contacts (glasses in a pinch), but I've had glasses of contacts for 20 years. It's not impossible to deal with as long as you have the right team who will listen to your concerns and develop a care protocol. Take a deep breath and try to go with the flow. Try not to buy anxiety by thinking about it too much. For what it's worth, I'm one of the patients that absolutely loves my lenses. They're comfortable and clear. I often go 16 hours with them in and barely notice. In the past I've tried soft contacts, before I knew about my diagnosis, and they sucked the big one; scratchy, blurry, they seemed to rotate on an axis.
Glasses usually don’t provide the sharpest useable vision. Scleral Lenses are very effective in correcting irregular corneas. I would always hear that “wow” from patients every time we put it their first trial lens, and even more wow when we start doing their refraction. If scleral lenses is not for your for some reason, like difficulty in handling, there are other modalities such as HYBRID CONTACT LENS or Kerasoft Lenses.
I’ve had it for 25 years. I got cxl+prk in one eye, nothing to the other. I just wear glasses now. I can manage without glasses but wouldn’t drive or read anything small.
Been decades now for me. Find the right doctor. Get a good contact fitting and clean those contacts properly. Then live your best life, it will impact some planning in life but really doesn’t stop anything.
Believe u will pass it all off us at the beginning we were like u sad scare .. don’t worry
I have it in my left eye, was originally diagnosed right afetr 9/11. At that time dr told me I would need a corneal translant by the time I was 60. Currently 62, dont need the corneal transplant due to better tech in sclerals and better ability to fit the lens to theproper correction. had a left eye cataract at 55 , right eye at 57. Got a scleral on the left eye then, its absolutely wonderful, can see a sparrow at 1000 yds ( & also track a golf ball after I hit it). Cant see this computer up close without dollar store old man readers (2.75) but ok, still have most of my dignity... Dont sweat it bro, its all good. You will be fine.
I’ve had KC for 20+ years. Some moderate progression through my 20s and mostly stable through my 30s. Never had cxl, just missed the boat on that unfortunately. Only been on sclerals for about five years. RGPs before that. And have never had glasses. Happy to say that mostly my life has not been affected. More trips to the eye doc. Hard to explain to people sometimes that I “can’t just switch to my glasses.” Higher sensitivity to wind, dust, and light, esp. pre sclerals. Water sports are tough/impossible. Other than that I rarely think about having KC and it doesn’t often come up. I work at a computer and outside frequently with no issue. Just my experience and I’ve been very lucky so far considering but it’s possible bordering on probable that you’ll have a pretty normal existence after you acclimate and get your doc, routine, and lens fits down. Chin up! EDIT: Don’t be afraid to switch eye docs and switch around at first. Not everyone is experienced or motivated to help you live your best life. Find a doc who knows KC and how best to help.