I was just diagnosed with thisnon wednesday after 15 years of seeing dr after dr asking for help and no one knew what to do or what was causing my vision loss!! New to the journey looking for friends
I have keratoconus and i wear hard glass contacts which is very hard to wear at first but keratoconus wont leave you blind. You wear the contacts and the progress will stop, also just pray and ask the lord, he will do anything for us
Woah, I'm so glad I've found your channel. You are very brave. I just found out today that I have karetoconus. I'm awaiting to hear my options. I have 20/200 and 20/400. With glasses I have 20/50 and 20/80. I look forward to watching your videos and hearing your experiences. I've felt alone with my vision problems like no one understood but with this diagnosis I have hope.
i am 42 and got diagnosed with Keratoconus a little over a year ago. it has been really hard not being able to drive and finding myself depending on other people more and more. i don't have insurance right now but have been saving for the cross linking. it's good to know that there are other people out there going through the same experiences with this disease. thank you so much for sharing!
I was just diagnosed with Keratoconus and My right eye is pretty much gone as well. My left eye is still somewhat clear. I never really knew what was wrong with my vision until I went to see an eye doctor this past month. I was born with a lazy eye as well so I've have a few surgeries because of that already. looking at someone else who has the same issues helps a lot. thank you for the videos.
@@That1BLKguy_Q thanks for replying buddy can you tell me did you see double vision or discomfort in eyes and are you wearing glasses or contacts what is your prescription thanks for replying
I had my corneal graft in 2001. It was scary but I would have the other eye done in a heartbeat if needed. I have had no problems at all since and the short time I suffered some annoying adjustment symptoms was totally worth it
Hi Kelly, Thanks for your supportive responses. Congratulations on getting some of your stitches out early! I hope you are healing well! I wanted to give you a quick update on my situation and ask you a few questions. First, I went and saw a second specialist and I really trust him. He seems to be very knowledgeable on the subject. The majority of the "shock" has warn off since I last wrote you, but it still creeps up, once in a while. At my last appointment, they put a temporary contact in my right eye (just for the time of the appointment) to ensure that I did have vision in my right eye at some point. They were able to correct it from 20/400 to 20/50 with just the contact. It was the most euphoric feeling when I went from not evening seeing the big E on the chart, with my right eye, to being able to see at least 3 lines down. Given this information, my doctor has recommended we move ahead with the cornea transplant. He said my condition is too far advanced to really benefit enough from wearing a contact on a daily basis, We have scheduled the surgery for for June. My question for you is, now that you are moving along in the recovery process, are you noticing a difference in your vision? Would you do it again? Also, any other tidbits of advice you have about the surgery would be greatly appreciated, if any. I know you've said a lot in your videos and they are still very helpful. I personally would really like to see a Q and A video if others agree. Thanks again for taking the time to post about your experience.
+Andi Pitts Hello Andi, It’s so nice to hear from you again! First of all, I’m really happy that you have found a specialist you trust. It certainly makes the whole treatment process of keratoconus more tolerable. I’m also happy to hear that you have since been able to adjust to the diagnoses and have been experiencing less shock from it. Being able to see more lines on the eye chart is so exciting! Similar to your situation I wore many different types of contacts however they did not offer enough of a benefit on a daily basis, they oftentimes would irritate my eye after a few hours. I am hopeful to return to soft lenses after all of my stitches are removed. So, based on my experience I think it’s good that you are moving forward with the surgery instead of struggling with contacts for an extended period of time. To answer your questions, first, as far as healing goes everything is moving along exceedingly well. As you’ve seen in my latest video half of my stitches were removed about two months early. After I stopped taking the post-op medications it honestly became easy to forget I had a transplant in that eye. As far as my vision goes I’m sure it still is continuing to improve, however, it is so gradual that it is hard for me to self assess. I have noticed that my transplanted eye has sharper vision at a distance than my left eye, and my left eye has clearer vision with close objects. This may change once all of the stitches are removed but I’m not sure. I would definitely do it again, in fact, after my transplant I was slightly upset that I’m supposed to have cross-linking in my left eye instead of another transplant. I think I mentioned something along the same lines in a previous response to your comments, but aside from the first month or two after surgery things can seem like they move very slowly. Try not to be discouraged by it, either way you’re moving in the right direction towards improving your vision, even if they feel like baby steps. I’d be happy to make a Q&A video. What I think I might do is create a video titled “Ask me your keratoconus questions” or something similar, where I ask everyone to ask their questions in the comment section so I have a compiled list of questions to address in the Q&A video. If there is any specific question you’d want me to address in the Q&A I’ll post the “ask me your keratoconus questions” video probably within in a few days. Other than that I’m sure you know by now that you can contact me on here at any time with any questions or concerns I can’t wait to hear from you as you move forward in this journey!
really helpful video - getting diagnosed with keratoconus yesterday and hearing about your experiences is making me feel a lot more comfortable. What is particularly interesting about your videos is that they were filmed before 'cross linking' was approved by the FDA in 2016. It seems now in 2019 it's much more widely recommended. From my own perspective, my poor eyesight has made me feel increasingly worthless and when the eye doctor sympathized with my brain being 'overloaded with messed up signals' I realized that it was true. Eyes are part of the brain and bad vision results in mental noise.
Thank you for your videos, they helped me with my decision-making process. I have been suffering with this since my early 30s. I am now 50 and I am on my Day 1 from my corneal transplant this morning. My KC stemmed from extreme rubbing and rigid contact lens. Last year when it was too hard to drive, I decided to get 'er done on my left eye. It was too far gone for cross-linking, so a transplant was the solution. Once again, thank you, it seems your videos are the only ones documenting the patient's experience of this RARE condition. Please keep it up ;)
I also have Keratoconus...It is so crazy that you said your an artist. I too am an artist. My mother told me before she died that I should do research to see if there is a link between being an artist and being blind, She had taken up an art history class in college and she said she learned that "All the great artists went blind"...
I was just diagnosed today. The doctor said very early stages though. It's a little scary. My grandma has it also and has had 3 cornea transplants. Thank you for this video!
I'm 14 and this February i was diagnosed with keratoconus and I soo appreciate your video personally because I'm scared and still in shock but it feels me comforting knowing what to expect, thank you
I was finally diagnosed with it this last year. I've never had a glasses prescription that lasted between checkups, but no one noticed until the last checkup with a new doctor. My left eye is more advanced, so I constantly close that eye and focus with just the right to read anything. Sunlight is horribly painful, as are most fluorescent lights, so I carry those roll-up sunglasses with me and wear them most of the time when I'm out. My insurance is garbage, so I haven't had the topography done yet, but I'll have to soon, I probably couldn't pass the eye exam to renew my drivers license at this point.
Also, I've heard that the eye rubbing is not really a cause. They're pretty much ruled that out, It turns out that my birth-mother (I was adopted, but met my family a few years ago) also has it. She's already been through one round of transplants. The common belief now is that this is a genetic issue.
thank you for sharing your experience. I am wishing you well as you explore the many treatment options of KC. I know different doctors have different theories on the disease. it is my belief that it is multifactorial, probably brought on by genetics but accelerated by mechanical rubbing of the eyes.
I am a guy and i know the exact cause of keratakonous..i have habit of doing everything in excess like playing games or watching tv at a stretch n even though my eyes cant take it anymore i still used to watch it long time and now it has come to a stage where everyday my eyes pains n am very sensitive to eye and to b frank my eye structure changes shape it has become very difficult to socialize as i badly affects my personality..
i have keratoconus too, kelly how much time does it take for bluriness to go, also, can a doctor tell that u have been operated upon?,, i have a medical check up cmg up soon thanks
Gurdit Singh It's such a small surgery (by that i mean done fairly microscopically) that they probably can't tell in a general check up. Though if you feel that you will be frequently put into a situation that risks the health of your transplant you may want to include it in your medical background info.
Kelly McEwen thanks( followed), by the way ,was ur vision blurred for a few months after the operation? Doc advised me for cxl cross linking... Going through it last week of October
I found out I have keratoconus my junior year of high school too! I'm now a freshman in college and my eyes are just getting worse. I got the hard contacts once I found out I had it and I hardly wear them because the hurt so bad. but my family doesn't seem to understand it.. i hate going to the eye doctor as well. I'm currently avoiding my check up 😂...I don't know what to do now.
hard contacts are the worse i have them too! i just had crosslinking surgery two days ago to stop the keratoconus from progressing. hoping i can wear glasses after.
I have to go to an eye specialist because I might have keratoconis I’ve had glasses since I was 8 and my eyes have just been getting worse and my optometrist mentioned that I have to get tested because I keep losing my vision, it sounds like it really sucks so I hope it’s not the case, I hope things get better for everyone who has keratoconis. Much love.
I have keratoconus and I absolutely hate my life rn. Not trying to bring you down though. Its 1 year since my crosslinking and I have optical aberrations, dry eye and sort of pain. Cant use contacts, normal glasses just dont fix those even tho I can do 5/10 lines with correction. My doc said my best chance is wait 3 more years until cornea flattening reached its plateau and do prk to remove astigmatism.
Contacts lens don’t work for me anymore now that I have acute hydrops on both eyes. I have to get a transplant 😔 I hate the eye chart, getting pressure checked, everything.
Hi Kelly, I'm an Australian and was diagnosed with Keratoconus in 2006 (when I was in our tenth grade). I, too, despise the eye chart. My Ophthalmologist has "underlings" (for lack of a better word) to do they charts. One underling literally gets exasperated with me in regards to the chart and her "Which is better? One or two?" which makes dealing with the task about 10 times worse. I haven't watched your second video, but it's great to see someone talking about Keratoconus. Emma
+hobsquabble Hello Emma, I'm glad to know i'm not the only one who is frustrated by the eye chart. The asking of "which one is better?"is painful enough but when the assistants show that they are irritated by the struggle it does make it worse. I've been told i overanalyze it but i think trying to analyze the chart comes along with keratoconus.
+Kelly McEwen Yeah, my actual optometrist (who is awesome, as she picked up my keratoconus the first time I saw her) is awesome, she understands that with each blink, or lack thereof, our vision can change. I feel like I can say to her "well I saw them before I blinked and now they're blobs of black". I've had both eyes cross linked (one in 2009 and one in 2014) so if you have any questions, don't hesitate to ask. I'm going to try to think about a good question for your new video. (I watch the whole series from this one, when I should have been writing an assignment - as I should be now). I'm so glad I sought out others with Keratoconus.
+hobsquabble It's great that your optometrist is so understanding of the condition. That has to make things a bit more comfortable. Thank you for offering your support to me as well :) My biggest questions regarding cross linking are first, I've been told cross linking is more painful than a transplant, what does this pain feel like? and how long did the pain last? I plan to film the Q&A video at the end of may, if you don't have a question to ask before then I will likely make another Q&A as long as there are questions to be answered. To be honest I am a bit honored to have been procrastination fuel lol. I am glad that this series can be of some interest and helpful :)
+Kelly McEwen I wouldn't be able to tell you how painful it was in comparison to the transplant, and while I don't have a lot of memories in regards to the first one, and I'm pretty sure i coped worse with the second one than the first one (I think it's because my 2nd/right eye is the one I use to see more than the left, which had poorer vision). Basically, once the local anesthetic wore off it was like I constantly had something in my eye. I found that most of the first night that eye was just watering all the time. I was definitely taking the Panadeine Forte (paracetamol and codeine mix) By the time I woke up, the watering had pretty much subsided, and the pain reduced but still enough to make me want to take Panadeine (particularly for sleep). I can't remember whether it was day 3 or 5 (leaning towards 3) when the (soft) contact lens they use like a bandaid come off. The pain was almost non-existent by then. There was a massive antibiotic drops regimen, for weeks to months after, which also prevent "Hazing" or scarring where the skin cells were removed. Another thing to prevent the scarring was the 3000mg of vitamin C I took a day for about 2 weeks before and 3/4 weeks after. One of the "underlings" (who was awesome and I'm sad he's gone from the practice but happy for him) suggested this when I had the first eye done, and we really think it helped in not having a massive amount of scarring. Check with your ophthalmologist first, though I doubt it would be an issue. (Also I'm pretty sure Vit C is used by the body in collagen production). If you'd like I can still see if I have my instructions and double check the 3 or 5 days thing. (Still pretty sure it is 3 days). You were good procrastination too, in the sense that no one gets that the fluro lighting on campus makes it hard to do a lot of computer work, and then sitting in the daylight is hard because that changes depending on the clouds /time of day. It just made me realise that my keratoconus affects me more than I used to think it did.
+hobsquabble Thank you so much for sharing your experience with cross linking. This helps me alot in understanding what to expect as I move forward in my treatment plan. it sounds to me that the pain associated with cross linking is similar to the transplant but perhaps a bit sharper. Also it seems that there was more medication involved with the healing of cross linking. I hadn't even thought that there was risk for scarring with cross linking. I appreciate knowing this as I am sure it will be helpful in healing properly.
How many procedures did you got and did your vision improve at least a little bit. He offered me three c3r, intacts, and ck which is a total of 30 grand but that's only for me to use glasses lol.
I am a karatoconus patient . i am not comfortable at contact lances . but do not want to go cornea treansplant i am 29 Now . karatoconus is bad deases .
I haven't personally used pinhole glasses but I know that using the pinholes in office can help clear my vision, though for me I find it somewhat distracting trying to focus on a hole to look through. Hopefully someone else here has had experience with the glasses that can tell you their effectiveness.
21 and just got diagnosed yesterday, my left eye is much worse then my right but can still see reasonably fine so far. I'm seeing a specialist for treatment on the weekend. My question is does this effect the appearance of my eye, like will it look very gross abnormal from the fount compare to normal eyes.
to the average observer you eyes will look no different. to the doctor the shape of your eye and potentially some scarring can be observed by an optometrist. It may cause some cross-eyedness or you may experience some slight twitching from time to time. but you're eyes will not change in appearance to the naked eye of an observer.
DanDaMaN95cov I'm 20 and was diagnosed in July last year. My left eye is also much worse but both are the worst he's seen. I can't do lasik Bc it may make vision worse. Go feb 6th to see my options. Maybe Gas Permeable contacts or cornea transplant. Wish you the best of luck that there is a fix for you.
My name is T.kishan kumar from India. i have keratoconus and i'm 21 , now i have used RGP type contact lens, but i can't struggling with as, i can't drive car & bike at night time,and travelling is hard, so i need complete solution for this problem. Expecting your valuable reply.
Hello, I wish i could give you more insight regarding night time driving. however, I think asking your doctor about that would be best as I am not a professional, I am only able to speak on my personal experiences and am not qualified to give medical advice. In regard to the RPG contact lenses, I found them to be very uncomfortable and was only able to wear them for a couple hours. I later switched to scleral lenses which were much more comfortable.
There is a new fda approved procedure ---crisslinking and intacs. I did these on my left eye 6 months, it seems it is working, I see improvements. I just hope this fixes it. Praying for everybody here who has Keratoconus.
Got my cross linking done Wednesday, first 2 days of recovery was painful. But was worth the £3,150 especially as we are not the richest of family's. 🙏
hey.. i have keratoconus..my eyesight improved a lot after crosslinking..but i saw further improvement in my vision after taking vitamin d supplements..i had my level tested and found it to be really really low :)
+Ameera Yusuf Thank you for your Input! I have been taking a multivitamin with zinc to help the healing process along. However, Im certain my vitamin D levels are low. I'll look into starting a vitamin D regimen once the sutures are removed.
Ameera Yusuf I read this online on a lot of forums of people taking vitamin D3 and it had really helped improve their keratoconus to the point it's regressed,there's also studies from the 1938s supporting this, I'm convinced and have started taking vitamin d3 1000iu
Is it possible poorly fitted contacts can trigger this..? Im 35 and started using contacts 1.5years ago the optician said the contacts weren't a great fit and now iv been diagnosed.
I failed my vision test for the dmv and have to see a eye specialist I’m just worried I won’t get my permit to learn to drive at all. I have keratoconus in one eye but yeah I just hope I can drive..
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My optometrist said to me that the causes you have mentioned are not real causes, only the ways to speed up the development of keratoconus if you have genetic predisposition i.e. thin cornea. I don't know if this is completely true, but in my case I have probably damaged my cornea two years ago by rubbing my eyes too much and now I have similar symptoms to those of keratoconus - even when wearing glasses with full correction I see triple or more images on each eye separately. It is making me nauseous, depressed and after 3 years of studying with an average mark of 9 I'm failing this year and I can't even repeat the year because I finished less than half of my subjects. Sorry I had to write this down somewhere. :)
Thank you for sharing your story, I find it interesting that your optometrist totally discredits the other theories of the cause of KC. Im sorry to hear of the challenges you've been dealing with, I know KCcan make school more difficult, I plan to upload a video about my school strategies with KC soon, but I recently broke my computer so it might be a few weeks.
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Well, he likes to use a word "genetic" quite a lot. :) When you fix your computer please upload that video. I would really like to see it and I think it will be very beneficial for many students suffering with KC. Cheers! :)
Hi Kelly, First, I can.t tell you how helpful your videos have been! I just received my diagnosis this past Wednesday. They are recommending a transplant in my right eye and Cross Linking in my left eye. I honestly had no idea! I expected to get a topical cream or something because my mom had noticed a white spot on my right eye. We expected it to be an ulcer or something. We were hit like a ton of bricks with this! I think my left eye compensated so much for the right that I really didn't noticed a great difference. Once in a while, I thought I needed to wear my glasses more because I noticed more of a blur, but certainly not to this extent! The past few days have been a complete whirlwind. Your videos have brought me the most peace thus far. Do you have any advice for someone that is just starting to learn about Karatoconus? My feelings about the whole thing change hourly. I was in such shock at the doctor's office, I couldn't think of many if any questions to ask. Now that I have a basic understanding, the feelings of fear are somewhat leveling, but I still get random extreme feelings of fear. The doctor made it sound relatively routine, but it certainly is nowhere near routine, but it certainly isn't routine to me. How is your healing process going? Have you had the Cross Linking yet? Thank you again for taking the time to educate me!
+Andi Pitts Hello Andi, I’m so glad my videos have been able to help you! It warms my heart to know that you have felt more at peace because of them. I can relate so much to what you are telling me about your keratoconus diagnosis. I too was caught off guard by the diagnosis and it is completely normal to be feeling a whole range of emotions. I was in denial for so long about getting a transplant, partly because the doctor who first told me was rather cold and calculated about the situation. So, my first bit of advice is to make sure you have an ophthalmologist that you’re comfortable with if you don’t already. Your doctor can make a huge difference in how you are feeling in this situation and through the treatment process. Second, when the doctor tells you about the aftercare of a transplant it sounds much more frightening than it really is. Not all experiences are the same, but for me I was off the anti-rejection meds within two months (and have not experienced any problems being off them). I think finding a community of people to talk with about what you’re feeling is essential to your mental well being also. I personally went through it alone for the most part and I know it was hard for others to relate. Honestly, I’ll be happy to help you with that in any way possible as well. These videos have been just as much help for me to express my feelings even though my intention was to help inform others about keratoconus. I suppose a good question to ask is, what is causing you the most fear in this process? I know it can be a number of things, for me it was both the fear of it affecting my ability to create sculpture and fear of the surgery and recovery itself. Even later on, after I had embraced my keratoconus as part of who I was, I was afraid of losing my identity. The healing process has gone very well, I have been able to see an improvement in my vision and any discomfort associated with the surgery was gone in less than a week. I still have stitches in my eye therefore I am unable to receive a new eyeglass prescription. My next appointment will be in a couple months, at that time the doctor will asses when they might be able to start removing stitches. I have not yet had crosslinking however, I will definitely follow that process and recovery on here when the time comes. I will say that process has gone a bit slower than I was expecting, I initially thought I would be getting crosslinking last month but I have yet to discuss it with my ophthalmologist. I will discuss it with him at my next appointment and talk about it in my 4 month follow up video afterwards. I hope this information has been helpful and I haven’t just been rambling on. Please don’t hesitate to let me know if you have any other questions or comments as you continue in your keratoconus journey. I’d be happy to help :)
+Kelly McEwen Kelly, Thank you so much for your caring response. Let me give you a little bit of a background on myself which will also help better explain my fears. I am 30 and married with a 2 year old son. I currently stay home with my son. I have experience in the world of disabilities, both personally and professionally. I have had Cerebral Palsy since birth and walk with forearm crutches. I understand your fear you mentioned about Karatoconus being part of your identity. I would likely feel the same fear if someone were to tell me they could completely cure me of CP. Before I had my son, I received an Masters Degree in Social Work and worked for the state Vocational Rehabilitation office, where I helped people with various disabilities find jobs. However, my experience with visual impairments is very slight and it is a whole different story when it’s me! My greatest fear is the possible fast progression of the Karatoconus. Since this last appointment, I have gathered up two prevision eye glass prescriptions, one from 2004, when I was 18 and one from 2009, when I was 23. They were done at Sams Club and Walmart. Both of those prescriptions appeared to be very mild, so much so that I didn’t wear my glasses very often at all! This last prescription was very different. The right eye was not correctable, hence the recommendation for the cornea transplant. They were able to get the left eye back to 20/30, I believe. What is bothering me the most is that from what research I’ve done, Karatoconus usually starts during adolescence, yet I am WAY past that stage of my life and am just barely discovering that I have this condition and that it is fairly advanced. One more fear that keeps creeping up is the pressure changes in the eye when bending down. I plan to use my crutches all the time for a while to try to prevent unnecessary falling. The key word there is try. Sometimes things happen and I can’t help it. I read somewhere that with the new transplant procedure isn’t as concerned with the bending concern because of the way the laser works. I’m not totally convinced that it isn’t still a concern though. Fortunately, I don’t drive now, so there won’t be many changes for me there. I have a great support system with my husband. parents and you (THANK YOU!) I am slightly concerned about my ability to return to my normal of regularly caring for my son, but it sounds like you returned to a relative normal within a couple weeks. Is that accurate? I’m sorry this is so long. Like the videos are helpful for you, I think writing out my fears is a form of comfort to me right now. Thank you again for all of your advice and caring thoughts!
Andi, Thank you for sharing your story with me. I am very inspired by your resilience and passion for helping others. You have given me greater insight into what you may be feeling in this moment. When my eyesight first began changing I was getting my prescriptions from eyeglass world. Though the employees there have proper training they had less knowledge about the disease, it wasn’t until I went to a different eyeglass company and an ophthalmologist that I was diagnosed. This may have been a similar situation in your case, though the employees at Walmart and sams club had the skillset to prescribe you eyeglasses they were probably less knowledgeable about keratoconus. Keratoconus is progressive so it is understandable that your vision has deteriorated. From what my doctors have said and what I’ve read the progression of the disease has a tendency to level off or stop by around age 35. Have you seen an ophthalmologist or was it an eyeglass company that recommended a transplant? There is another option called intacts, which is a plastic ring that is inserted around your cornea to “reshape” it to a more normal structure. This was not an option for me because my cornea was too scarred and thin. As far as bending down there is a small period of time where you will need to refrain from it. The laser as far as I know doesn’t change this fact completely but may reduce the amount of time you are to remain upright. I had the laser procedure myself, the main benefit of this is due to the zigzag shape of the incision. Both your cornea and the donor cornea are cut to the same shape. This creates increased surface area and a perfect match, and therefore a stronger junction. For me, I was able to bend down a week after surgery. Which should be dedicated to recovery as is. Hopefully, you are able to receive help caring for your son during that week. Also, the pressure change that continues for a bit is associated with the post surgery medications. After discontinuing their use your pressure should return to normal. I’m sure you’ll be able to return to your normal ability to care for your son. I was able to return to normal activities about a week post surgery. The main sustained changes (for about a month or two) is taking the anti-rejection meds, wearing an eye shield at night, and not being able to lift more than 20 pounds. All of which after 2 months are no longer necessary for me, though the weight limit is now 50 pounds (this is so you don’t cause your stitches to break) No need to apologize for the length of your response, I’m glad to help.
Kelly, I've upgraded to a bigger computer monitor that I can see much better, so hopefully that will reduce the number of repeats and typos I have in my messages. :) I did go to an Ophthalmologist this time. From what I understood from him, my case is too far advanced for the intacts as well. My right eye has the corneal scarring that is pretty prominent and the left he referred to as moderately affected. Fortunately, I am scheduled for a second opinion with one of the best eye institutes in the state, if not the best. I also have my Pentacam test scheduled for Thursday with the doctor who diagnosed me. We are making forward progress, it's just SLOW! Tomorrow will be a week since I was first diagnosed, but it feels like a month ago! Thank you for clearing up the pressure questions for me. I think the worst part right now is simply waiting. My mom (who is basically my right hand woman) and I keep going back and forth, if I'm scared, she's not, if she's scared I'm not. I dread the moment when we are both fearful at the same time! Please know that I am happy to be a support for you as well. You are much further along in the process than I am, but hearing your experiences, both good and bad help give me a glimpse of what I may experience in the near future. I hope you are well. Thank you again! Andi
Hello Andi, Its good that you saw an ophthalmologist and are also getting a second opinion. As I noted in one of my previous messages it’s a good idea to find someone that you are comfortable with in this process. I understand how slow the process can feel, its never fun playing the waiting game. Its good you have your mom to support you, hopefully talking to your doctor will help ease the fears of both of you. Thank you for your support as well :) I greatly appreciate it, talking to you has been beneficial to my healing as well. I’m also glad that my videos and comments have helped to give you a glimpse of the process. Good luck with your upcoming doctor appointments! I’m sure they will go splendidly
im 17, got diagnosed last year on my right eye. Everythings completely blury, so far i can see and mainly do see from my left which isn't showing any progression of keratoconus (very mild) so it does not affect my every day life as of now. I live in the UK so i can get the corneal transplant any time for free, though im not sure of the consequences because im only 17 and still in the middle of exams and hope to go off to uni. I was told by the doctors that by doing the surgery, it could result in further surgeries down the line and its a long recovery period. This may sound silly, but would it affect me doing sports? I aspire to become a proffesional athlete and would like to now if id have to tone down the level of exercises i do after surgery? (i do taekwondo and plan on participating in world championships, so would like to know of by doing the surgery id have to stop taekwondo)
Hey what you have gone through its the same that all of us have gone through even I went to the doctor and most of the doctors have given me glasses to wear for their lengths to wear but at the end I came to know about care taken as I did much study on TH-cam and looking at the videos and finally I got Intacts and c3r in my left eye last year and recently this Saturday I had c3r in my right eye So am I vision in left eye it fluctuate sometimes it's very clear and sometimes it not it's not clear sense it's only been a year so let's see how far it goes but I am satisfied with the c3r in Intex and recently I have done it for my right eye and its as if has only been a week so I hope it gets better but I am happy for my right eye because I did it only so that c
Hi guys. I have kareto too. I'm 15 and my whole life is art. I'm the top in my art class but I've never told my art teacher. It makes me very depressed to think that I'll need to go under some stuff with my eye. I went to the best eye specialist I know. They told me that I don't have Kareto yet, but it is forming out. They also told me that it can re-appear when I'll be 21. I'm a bit confused now. I got hard gas permeable contact lenses but i hate them. They get stuck in the corners of my eyes and it stresses me out. I only wear them like twice a week cause of it. I don't want to undergo surgery. If anything changes or damages my vision I would rather commit suicide, I'm terribly sight dependant. And scared. Its good to know that there are more of you who share this with me. Although I'm kinda sad for you all.
Hello, I can absolutely relate to your concerns. I am a sculptor and went to school for art. When I first found out about my Keratoconus I too was worried about how the treatment options would impact my art making. Fortunately, since your KC hasn't advanced you have many treatment options available to you. As far as I know cross- linking is one of the best ways to keep it from progressing, if that is your main concern. Or at least for now, it is the option for prevention of progression with the most research behind it. I understand that it all can seem so scary but just know you aren't alone. Please let me know if I can be of anymore help to you.
dude i was diagonised with keratoconus when i was 17. Like u i had to go under several eye doctors who cudnt identify my disease..they provided me wth glasses rising powers upto -9 to -10 in my right eye . Fortunately i met a dr. who was a cornea specialist she asked me for several tests whose results confirmed i had keratoconus.. the condition of the cornea was not good enough to keep untreated or corrected wth glasses.. i went through 2 successive C3R oprtns in each eye in two yrs..... now i wear rigid gas permeable lenses in both my eyes...i know it hurts ur eyes but trust me...if u wear them periodically with proper handling and cleaning.. ur eyes wud get adjusted to this foreign substance... it wont hurt.. I am from India .. i dont know ur nationality but there is a very good eye drop named GENTEAL TEAR DROP sold in our country manufactured by NOVARITS . This drop can be administered to any person either having this disease ( even wearing ur lenses) or to any normal eye...this drop reduces the pain or the prickling sensation u feel wearing those lenses from minimal to no pain at all :) .... since our disease can nly b controlled by c3r oprtn... the permanent way to get rid of this problem is by having a corneal transplant surgery ..but as ur corneas r progessing slowly to keratoconus... u can go for this option when ur cornea still degrades after years of c3r oprtn :) stay happy and best of luck for ur life in art i am an undergrad student of geology i suffer more than u with a regular xposure to rock mineral dust nd huge stress when i do sampling... so dont give up :) .... remember people wearing lenses have a sharper sightedness :P
Does scleral lens help as well? Especially while you are on stage 2? My doctor told me that if its keep progressing they might do a cross linking surgery..but i have not tried scleral lens before
I have keratoconus and im 21. I was told I had at the age of 17 but could've gotten it at the age of 15. I have Rigid Gas Permeable contacts but I hate wearing them because it made me so uncomfortable. I havent seen my optometrist for a while. I want to learn how to drive but I am scared too.
+iFlyUp I would suggest checking out other options for contact lenses if possible, I know they can be expensive. I also wore RGP lenses and found them to be uncomfortable. I eventually switched to scleral lenses, which gave me the clearest vision and for the most part were comfortable. they did however cause me some occasional irritation when removing them. I understand your fear in learning to drive, driving can be nerve wracking especially if your vision isn't the best. I did have my permit when I was 18 but was too afraid to take the test for my license ( I can make a video on this if you would like more information, or I can talk about it in my Q&A video. Just let me know which you would prefer) I also plan on creating videos when I start driving again about that experience (I plan on starting to drive again in a month or two) I also notice that you have asked some great questions for my Q&A video, I look forward to answering them for you. I plan to have the Q&A video out in the next few weeks.
Got it unfortunately... Had Cross Linking and laser in both eyes. Implant in my right eye. Terrifying, wish I found this a couple of years ago Well done Kelly! I was misdiagnosed multiple times kept insisting that there was a problem, you are a STAR✨🌟💫Wendy K in Toronto, Canada
Hey guys, I’m from Germany and I wore for about 12 years now hard contacts, my visual sights is now at ~70% right eye and ~50 left one. Without hard contacts I can barely see (about 0,1% left and 0,01% right). Today I got the information that I’ve done everything wrong with hard contacts...I just don’t know what I should believe now...I went to about 4-5 special Clinics but that was the first one who said I should’ve had an operation about 7 years ago and now I’ve to get an PKP operation...it’s rly hard for me now to accept these facts...I still can’t believe I’ve to get the op in less than a week. Anyone of you have done the same operation and could tell me what you’ve done after that? I got told that I can’t see for atleast 2-4 weeks, also I should not wear my contacts which mean I’m blind for these days :(
@@Ranveersingh72682 I’ve had 7~ operations and still have issues with my eyesight + I’ve now issues with my tear fluid :) I can’t wear hard glass contacts anymore and had to switch to scleral lenses which isn’t great either. But I could accept these problems and started working again.
i had lasik surgery because i was quite short sighted and after a year discovered i had keratoconus....had surgery for that but still cannot see very well and i'm quite disheartened
when i said surgery i meant cross linking...they basically place riboflavin ( b2 vitamine on your iris and you have to stare into Uv light for 30 min) ... it was ok..not painful during the procedure but afterwards(first night i mean) it's really bad, as if you 'd have sand in your eyes...
+Ingrid Kiss Unfortunately as far as from what I have been told cross linking is only to prevent the disease from further progressing and doesn't correct for vision. It's really good for me to hear your experience with cross linking, Thank you for sharing. my fear has been that afraid procedure itself will be very painful as they had described it as shedding the outer layer of skin on the eye.
Nope...you don't feel that because they numb you with some eyes drops...I walked out of the surgery pretty content kind of high on adrenaline but at night I couldn't sleep at all so it's best to have someone with you to help ...I got really teary and was trembling from being tired and from the pain (it's more of a burning sensation) and I'd seriously recommend getting something to calm you down ( like a sleeping pill or something homeopathic with calming effects)...before and after the surgery the nurses were handing out xanax pills but I didn't take them...and most importantly make sure you go to the bathroom before ( they tell you the procedure is short but 30 minutes of staring into blue light feel more like an hour...)
+Ingrid Kiss Those are some great suggestions, thank you. Staring into a blue light for 30 minutes sounds like it would feel like an eternity. did you have to sit up during this or lay down?
Also I thought the cause of my Keratoconus was when I was in year 7 or 8 so about 3 years ago I got poked in the eyes really hard and I thought I got a lazy eye. But guess we just have to wait until they find the exact reason of how it's caused.
Hi, I think I have Keratoconus from the symptoms I've noticed in my vision. I've had this since I was around 13 years old and through time I noticed the condition progressed. Right now I'm 17 years old, and I had never really talked about this to my parents because I'm scared that they might get too worried about me. I never even went to any eye tests because it really scares me. My condition really gets me depressed and it really concerns me. It's hard to believe that this is a rare condition and I just think to myself "Why me? :(". I dont know what to do... I really care about my vision, I would really appreciate any suggestions you could give for me.
Hello, I'm sorry to hear that you have been struggling with this. I understand how frightening this can be. First, it is important that you have your vision checked, it is possible that you don't have keratoconus. Most often KC requires a diagnoses from an optometrist or opthamologist. I understand you don't want to worry your parents but i think they would be more worried if you continue to live with symptoms and don't inform them. While KC does make some things difficult it is a condition that many people live with and are able to treat. If it does worry you to tell them you are at an age where you can set up an eye appointment on your own, however i am not encouraging you to do this without their knowledge. It is very important to have a community of support from friends and family with this condition, if it turns out the doctor says you have KC it will be nice to have them there with you. I think that is my biggest suggestion first, is to arrange an eye appointment to see if it really is KC, I think this will help ease some of your worry. It may simply be correctable by contacts and glasses. And if it is KC its best to find out in the earlier stages of it. Also I am always here to lend my experience as support to you.
Thank you, I really appreciate your advice. Actually, I've been researching about eye conditions on my own for a couple of years just looking for answers or some explanations to my vision. So far, I've learned about Astigmatism, Visual Snow, Keratoconus, and as well as those other terrifying diseases that I fear to mention :( . The symptoms that concerns me in my eyesight are glares and halos that I saw around around bright lights, experiencing double/triple vision when looking at bright stuff and seeing a fairly small amount of static in dark things. My right eye is just slightly blurry than my left eye, although, I can see fairly clear from a far distance but still having a little hard effort to recognize letters or numbers from far away. I especially hate late night classes because it makes me walk home through the dark streets that were lit up by really short street lights that bothers my vision. Researching about these things online is not easy because it's quite unnerving. It makes me reflect on how vulnerable the human body is, but it's still an amazing biological thing. Sorry for widening the topic here :P By the way, thank you for the suggestions, I'm really happy you acknowledge my comment, at most times I felt alone about this, so I'm glad I'm letting this off my chest :)
I still would suggest that you see an eye doctor to receive a diagnosis. I understand why you have been wanting to research it online, uncertainty can be just as bad as an affliction at times. However, you may be making your worries worse. this is really common when googling symptoms. to get the proper diagnoses and learn about whatever treatment that may need you really need to see an eye doctor. The body can be fragile and vulnerable as you have said, and yes also amazing in all of it's complexities and inner workings. on the other hand, our minds can be quite resilient and are equally amazing in their complex and unique nature. This has been a great way for me to cope with my impairment. My "body" may be weak but it has given me the opportunity to strengthen my mind and discover my identity as a complex individual. You are more than welcome, I'm glad my experience can be of some help :) part of me starting this playlist was because I wanted to create a community of support for people with shared experiences. I know how polarizing this all can be and also have had times where i've felt alone on this journey. Feel free to look me up on facebook if you feel you need someone to talk to that can relate to your circumstances.
same here, i wear contact lenses just for one eye, its terrible, i wear them just at college when i need it... but i still have problems puthing them on eye, hah im scared of losing them, especially when it cost 400euros for one eye
Yay i did the transplant today 😀 my eye is still covered it doesn't hurt at all lol but it feels as if im wearing a contact lenses in my eye which is of course the new cornea but i forget about it and do whatever. i didnt look down i used my iphone lol not sensitive to light at all here i am sitting on bed and lights surrounds me all around. And yh im starving 💔 lol they didnt serve any food since 12 last night now its 8 pm hehe. im over excited and happy and cant wait for my eye to get fully recovered.. And there is a foggy vision in my eye after surgery idk y is that normal?
Yay! congrats! :) Your eye may also feel like you're wearing a contact lens because you very well might be. oftentimes a bandage contact is placed over the eye to protect it until they take it off during a follow up appointment. I will say try not to over do it. you probably shouldn't be reading on a computer. Like you, I didn't feel much pain the first day but I did too much because of it. Also it is completely normal for vision to be foggy after the procedure.
+Kelly McEwen they told me its ok to use computer read books or use the iphone too but wisely hehe. i feel tiny sharp feeling in my eye but i wouldnt call it pain lil pain in my head tho Bad taste in my mouth lol I put cortisone and anti biotic eye drops i returned home now. They told me sleep whatever side u like when u sleep dont take ur eye cover so u dont rub it while u r sleeping they also said dont carry babies lol u have no idea how many cornea stitches been damaged by children just avoid them glad im not a mum yet lol they said if u get ms relapse get 1000 mg cortisone it would helt recovering the relapse and cornea too but so far i got no relapses. They said i dont neex glasses after surgery but i bought sunglasses and they were a huge relief thanks to ur videos ;)
i also have keratoconus and im just 16.I have to wear contact lenses and the doctors are thinking about "crosslinking" ( I am german so idk if thats the proper english word for that).But hey there are things out there that are worse than keratoconus ^-^
I have had CXL done in both eyes and I can honestly say that there is nothing to worry about and would 100% recommend it to anyone with KC,there is no pain whilst the procedure is being done the worst part for me is when the doctor kept pouring water on my eye(I think it was to help cool it down as well as cleaning)I had pain the night after the procedure but the next day it was fine and I havent noticed any difference in vision or shape yet but the CXL is not about changing the shape or vision its about stopping progression best of luck you will be on your way to recovery in no time :)
how much time does it take for bluriness to go after cxl? also does cxl leave any scar...can a random eye doctor tell u hav been operated upon? thanks.... doc told me in certain cases it can help change the shape of cornea,and sometimes it can reduce ur specs power too!
I am so confused keep up the good videos it's really helpful to see how u get on il be monitoring one of my eyes is almost 20/20 am praying it holds out
Hello, I am unsure of my eyeglass prescription at the moment because I have yet to get a proper refraction post-op. I have won contacts in the past, but have not yet since my transplant. I will let you know as I find out more information :)
I did wear sclera and plan to again in the near future. In this video I believe It was a little over a week until my surgery date and I believe you aren't supposed to wear contacts for at least a week prior, I stopped wearing mine a month prior to the transplant. Now I am not wearing them because I just had cross-linking a few months ago and need to be refitted and refracted for a new pair. hopefully that will happen within the next month or two.
NikosTH4I I have keratoconus and wear glasses. I get pretty good vision with glasses I'd say almost perfect.. My prescription is +2 -5.75cyl similar in right eye. I tried rigid contacts hated them too unstable. It depends how severe it is.
what would you like me to help you with? as far as your eye pain I would suggest talking to your eye doctor about it. Also try not to go too long on the computer or tv without taking a break.
Thank you for sharing, this is good for me to know. I was trying to decide whether or not to get crosslinking while in school or wait until winter break.
1 week and a few in : - doesn´t hurt any more (just sleep 3 days and u won´t feel much of the pain) -still a bit of shade -i might have lost a bit of vision ~ -10%(feels like it ^^) i was at 50% vision befor
i get cross linking right before the final exam, when i should graduate highschool, i did it in 2 weeks for both eyes, first 2 days of recovery its hard, you need to sleep, cant suport the light, but then should be fine, i had some problems with one eye because after crosslinking while i was sleeping my contact lenses to protect the eye dropout, another 2-3 days of pain:D be careful
lol, i think contact lenses its the only option for that, when first got to a medical center they give me glasses but i couldnt see anything with them, then i go to a special clinic and i get the result for keratoconus.. then i did cross linking and they told me the only way i can see its to purchase special contact lenses, but i didnt have the money then, and i purchase them one year later, without my contact lenses ( i have just for one eye) my vision is 40-50% left eye, 20% right eye
@@suzawilo I know the feeling 🙏 I found out I had KERATOCONUS about 5yrs ago..i ended up having a brain aneurysm and ended up in a coma for 3 weeks because of not having my left contact lens for 3months.. no oxygen was getting to my brain through my left eye and because of greed from my eye doctors secretary ,I almost lost my life.. keratoconus can be very serious and fatal without treatment!!
I regret rubbing my eyes only more frequently and harder the past year since I got regular astigmatism...now I got irregular astigmatism due to mild keratoconus yay! fml
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I was just diagnosed with thisnon wednesday after 15 years of seeing dr after dr asking for help and no one knew what to do or what was causing my vision loss!! New to the journey looking for friends
I have keratoconus and i wear hard glass contacts which is very hard to wear at first but keratoconus wont leave you blind. You wear the contacts and the progress will stop, also just pray and ask the lord, he will do anything for us
The same lord that gave you keratoconus in the first place. Brilliant. Keep praying, genius.
Woah, I'm so glad I've found your channel. You are very brave. I just found out today that I have karetoconus. I'm awaiting to hear my options. I have 20/200 and 20/400. With glasses I have 20/50 and 20/80. I look forward to watching your videos and hearing your experiences. I've felt alone with my vision problems like no one understood but with this diagnosis I have hope.
i am 42 and got diagnosed with Keratoconus a little over a year ago. it has been really hard not being able to drive and finding myself depending on other people more and more. i don't have insurance right now but have been saving for the cross linking. it's good to know that there are other people out there going through the same experiences with this disease. thank you so much for sharing!
I drive for a living and have had it all my life. My right eye is useless and just got fitted for Sclara lenses... I hear good things about them.
That’s quite late in life to be diagnosed with that . When did you notice your eyes were bad ?
I was just diagnosed with Keratoconus and My right eye is pretty much gone as well. My left eye is still somewhat clear. I never really knew what was wrong with my vision until I went to see an eye doctor this past month. I was born with a lazy eye as well so I've have a few surgeries because of that already. looking at someone else who has the same issues helps a lot. thank you for the videos.
Hyy how are your eyes now please reply keratoconus
@Sung jin woo 👋🏾 my eyes are fine. I've been going to my doctor, and so far my eyes aren't getting any worst so no need for surgery yet. 😌
@Sung jin woo also, my right eye has a strong astigmatism, but I can still see ok. Just can't read that well out of it.
@@That1BLKguy_Q thanks for replying buddy can you tell me did you see double vision or discomfort in eyes and are you wearing glasses or contacts what is your prescription thanks for replying
I have keraroconus too!!! Nice to see other people that have jt too & there experiences. Im scared of doing the corneal transplant...
Joana Arg meee tooo am really scared to do the transplant
Joana Arg Me too I'm scared to have it done but I know that I need to.
Joana Arg guide me about corneal transplant
I had my corneal graft in 2001. It was scary but I would have the other eye done in a heartbeat if needed. I have had no problems at all since and the short time I suffered some annoying adjustment symptoms was totally worth it
Joana Arg Im considering it. I just want to get it over with.
Hi Kelly,
Thanks for your supportive responses. Congratulations on getting some of your stitches out early! I hope you are healing well! I wanted to give you a quick update on my situation and ask you a few questions. First, I went and saw a second specialist and I really trust him. He seems to be very knowledgeable on the subject. The majority of the "shock" has warn off since I last wrote you, but it still creeps up, once in a while. At my last appointment, they put a temporary contact in my right eye (just for the time of the appointment) to ensure that I did have vision in my right eye at some point. They were able to correct it from 20/400 to 20/50 with just the contact. It was the most euphoric feeling when I went from not evening seeing the big E on the chart, with my right eye, to being able to see at least 3 lines down. Given this information, my doctor has recommended we move ahead with the cornea transplant. He said my condition is too far advanced to really benefit enough from wearing a contact on a daily basis, We have scheduled the surgery for for June. My question for you is, now that you are moving along in the recovery process, are you noticing a difference in your vision? Would you do it again? Also, any other tidbits of advice you have about the surgery would be greatly appreciated, if any. I know you've said a lot in your videos and they are still very helpful. I personally would really like to see a Q and A video if others agree. Thanks again for taking the time to post about your experience.
+Andi Pitts Hello Andi,
It’s so nice to hear from you again! First of all, I’m really happy that you have found a specialist you trust. It certainly makes the whole treatment process of keratoconus more tolerable. I’m also happy to hear that you have since been able to adjust to the diagnoses and have been experiencing less shock from it. Being able to see more lines on the eye chart is so exciting! Similar to your situation I wore many different types of contacts however they did not offer enough of a benefit on a daily basis, they oftentimes would irritate my eye after a few hours. I am hopeful to return to soft lenses after all of my stitches are removed. So, based on my experience I think it’s good that you are moving forward with the surgery instead of struggling with contacts for an extended period of time. To answer your questions, first, as far as healing goes everything is moving along exceedingly well. As you’ve seen in my latest video half of my stitches were removed about two months early. After I stopped taking the post-op medications it honestly became easy to forget I had a transplant in that eye. As far as my vision goes I’m sure it still is continuing to improve, however, it is so gradual that it is hard for me to self assess. I have noticed that my transplanted eye has sharper vision at a distance than my left eye, and my left eye has clearer vision with close objects. This may change once all of the stitches are removed but I’m not sure. I would definitely do it again, in fact, after my transplant I was slightly upset that I’m supposed to have cross-linking in my left eye instead of another transplant. I think I mentioned something along the same lines in a previous response to your comments, but aside from the first month or two after surgery things can seem like they move very slowly. Try not to be discouraged by it, either way you’re moving in the right direction towards improving your vision, even if they feel like baby steps. I’d be happy to make a Q&A video. What I think I might do is create a video titled “Ask me your keratoconus questions” or something similar, where I ask everyone to ask their questions in the comment section so I have a compiled list of questions to address in the Q&A video. If there is any specific question you’d want me to address in the Q&A I’ll post the “ask me your keratoconus questions” video probably within in a few days. Other than that I’m sure you know by now that you can contact me on here at any time with any questions or concerns I can’t wait to hear from you as you move forward in this journey!
really helpful video - getting diagnosed with keratoconus yesterday and hearing about your experiences is making me feel a lot more comfortable. What is particularly interesting about your videos is that they were filmed before 'cross linking' was approved by the FDA in 2016. It seems now in 2019 it's much more widely recommended.
From my own perspective, my poor eyesight has made me feel increasingly worthless and when the eye doctor sympathized with my brain being 'overloaded with messed up signals' I realized that it was true. Eyes are part of the brain and bad vision results in mental noise.
Thank you for your videos, they helped me with my decision-making process. I have been suffering with this since my early 30s. I am now 50 and I am on my Day 1 from my corneal transplant this morning. My KC stemmed from extreme rubbing and rigid contact lens. Last year when it was too hard to drive, I decided to get 'er done on my left eye. It was too far gone for cross-linking, so a transplant was the solution. Once again, thank you, it seems your videos are the only ones documenting the patient's experience of this RARE condition. Please keep it up ;)
I also have Keratoconus...It is so crazy that you said your an artist. I too am an artist. My mother told me before she died that I should do research to see if there is a link between being an artist and being blind, She had taken up an art history class in college and she said she learned that "All the great artists went blind"...
I was just diagnosed today. The doctor said very early stages though. It's a little scary. My grandma has it also and has had 3 cornea transplants. Thank you for this video!
I'm glad to hear your KC is in the early stages and wish you well in the process of finding the right treatment option for you :)
Thank you! :)
Corneal transplantation has come a long way luckily.
@@TheLarBear94 hyy lari how is your vision now did you face any problems
I'm 14 and this February i was diagnosed with keratoconus and I soo appreciate your video personally because I'm scared and still in shock but it feels me comforting knowing what to expect, thank you
I was finally diagnosed with it this last year. I've never had a glasses prescription that lasted between checkups, but no one noticed until the last checkup with a new doctor. My left eye is more advanced, so I constantly close that eye and focus with just the right to read anything. Sunlight is horribly painful, as are most fluorescent lights, so I carry those roll-up sunglasses with me and wear them most of the time when I'm out. My insurance is garbage, so I haven't had the topography done yet, but I'll have to soon, I probably couldn't pass the eye exam to renew my drivers license at this point.
Also, I've heard that the eye rubbing is not really a cause. They're pretty much ruled that out, It turns out that my birth-mother (I was adopted, but met my family a few years ago) also has it. She's already been through one round of transplants. The common belief now is that this is a genetic issue.
thank you for sharing your experience. I am wishing you well as you explore the many treatment options of KC. I know different doctors have different theories on the disease. it is my belief that it is multifactorial, probably brought on by genetics but accelerated by mechanical rubbing of the eyes.
i had the surgery in 2011 .. my eyes with glasses is 20/20
CHILDOFGOD478 what kind of surgery it is??
CHILDOFGOD478 name the surgery???
CHILDOFGOD478 what surgery?
No matter what surgery that is pretty rare .You are lucky if this is true.
I am a guy and i know the exact cause of keratakonous..i have habit of doing everything in excess like playing games or watching tv at a stretch n even though my eyes cant take it anymore i still used to watch it long time and now it has come to a stage where everyday my eyes pains n am very sensitive to eye and to b frank my eye structure changes shape it has become very difficult to socialize as i badly affects my personality..
Had my cross linking yesterday! Keep strong sister!
Thank you :) I hope everything went well with your crosslinking!
i have keratoconus too, kelly how much time does it take for bluriness to go,
also, can a doctor tell that u have been operated upon?,, i have a medical check up cmg up soon
thanks
the thing is i cleared a competitive exam(550 cleared, 35000 appeared), now wid keratoconus i m like **** #### ***** ***** -.-
Gurdit Singh It's such a small surgery (by that i mean done fairly microscopically) that they probably can't tell in a general check up. Though if you feel that you will be frequently put into a situation that risks the health of your transplant you may want to include it in your medical background info.
Kelly McEwen thanks( followed),
by the way ,was ur vision blurred for a few months after the operation?
Doc advised me for cxl cross linking...
Going through it last week of October
I found out I have keratoconus my junior year of high school too! I'm now a freshman in college and my eyes are just getting worse. I got the hard contacts once I found out I had it and I hardly wear them because the hurt so bad. but my family doesn't seem to understand it.. i hate going to the eye doctor as well. I'm currently avoiding my check up 😂...I don't know what to do now.
hard contacts are the worse i have them too! i just had crosslinking surgery two days ago to stop the keratoconus from progressing. hoping i can wear glasses after.
You should keep going to the doctor, because keratoconus is a progressive eye disease.
Arielle Winfrey same situation
Arielle Winfrey same situation for me....
Hi kelly, please can you tell me whats is your prescription of myopia and astigmatism after the diagnostic of keratoconus? Thanks !!
I have to go to an eye specialist because I might have keratoconis I’ve had glasses since I was 8 and my eyes have just been getting worse and my optometrist mentioned that I have to get tested because I keep losing my vision, it sounds like it really sucks so I hope it’s not the case, I hope things get better for everyone who has keratoconis. Much love.
I have keratoconus and I absolutely hate my life rn. Not trying to bring you down though.
Its 1 year since my crosslinking and I have optical aberrations, dry eye and sort of pain. Cant use contacts, normal glasses just dont fix those even tho I can do 5/10 lines with correction.
My doc said my best chance is wait 3 more years until cornea flattening reached its plateau and do prk to remove astigmatism.
the eye test is the WORST!! 1 or 2...1....2.. bro!! they both suck lol.
Exactly!!!
88cutty I thought i was the only one.
88cutty basically my average eye test
88cutty I can never read it. I don’t see the point of it.
LOL ikr
I have it, it can be corrected with eye glasses
I'm in early stages and not progressing at all and
CRT contacts can slow down the progression
u r so lucky
I have it and it sucks I can't ever do anything it's depressing
Juan Patino I know. Its sad.
Juan Patino it’s not so bad for me ever since I got my contacts now it’s like I don’t even have it. glasses never did help
i feel your pain. I just had my cornea transplant yesterday.
how was it? how much did it cost and where do u live? how are you now? do you expect to need glasses/contacts once u heal?
Contacts lens don’t work for me anymore now that I have acute hydrops on both eyes. I have to get a transplant 😔 I hate the eye chart, getting pressure checked, everything.
I'm 20 and got diagnosed with keratoconus about a month ago, I am scheduled for the cross linking surgery 2 weeks from now, I hope it works.
I wish you all the best! :)
brent burdett how did it go?
Dude, i am the same situation like. Can you tell me? How is it?.
Hi Kelly,
I'm an Australian and was diagnosed with Keratoconus in 2006 (when I was in our tenth grade). I, too, despise the eye chart. My Ophthalmologist has "underlings" (for lack of a better word) to do they charts. One underling literally gets exasperated with me in regards to the chart and her "Which is better? One or two?" which makes dealing with the task about 10 times worse.
I haven't watched your second video, but it's great to see someone talking about Keratoconus.
Emma
+hobsquabble Hello Emma, I'm glad to know i'm not the only one who is frustrated by the eye chart. The asking of "which one is better?"is painful enough but when the assistants show that they are irritated by the struggle it does make it worse. I've been told i overanalyze it but i think trying to analyze the chart comes along with keratoconus.
+Kelly McEwen Yeah, my actual optometrist (who is awesome, as she picked up my keratoconus the first time I saw her) is awesome, she understands that with each blink, or lack thereof, our vision can change. I feel like I can say to her "well I saw them before I blinked and now they're blobs of black".
I've had both eyes cross linked (one in 2009 and one in 2014) so if you have any questions, don't hesitate to ask.
I'm going to try to think about a good question for your new video. (I watch the whole series from this one, when I should have been writing an assignment - as I should be now).
I'm so glad I sought out others with Keratoconus.
+hobsquabble It's great that your optometrist is so understanding of the condition. That has to make things a bit more comfortable.
Thank you for offering your support to me as well :) My biggest questions regarding cross linking are first, I've been told cross linking is more painful than a transplant, what does this pain feel like? and how long did the pain last?
I plan to film the Q&A video at the end of may, if you don't have a question to ask before then I will likely make another Q&A as long as there are questions to be answered.
To be honest I am a bit honored to have been procrastination fuel lol. I am glad that this series can be of some interest and helpful :)
+Kelly McEwen I wouldn't be able to tell you how painful it was in comparison to the transplant, and while I don't have a lot of memories in regards to the first one, and I'm pretty sure i coped worse with the second one than the first one (I think it's because my 2nd/right eye is the one I use to see more than the left, which had poorer vision).
Basically, once the local anesthetic wore off it was like I constantly had something in my eye. I found that most of the first night that eye was just watering all the time. I was definitely taking the Panadeine Forte (paracetamol and codeine mix) By the time I woke up, the watering had pretty much subsided, and the pain reduced but still enough to make me want to take Panadeine (particularly for sleep).
I can't remember whether it was day 3 or 5 (leaning towards 3) when the (soft) contact lens they use like a bandaid come off. The pain was almost non-existent by then. There was a massive antibiotic drops regimen, for weeks to months after, which also prevent "Hazing" or scarring where the skin cells were removed.
Another thing to prevent the scarring was the 3000mg of vitamin C I took a day for about 2 weeks before and 3/4 weeks after. One of the "underlings" (who was awesome and I'm sad he's gone from the practice but happy for him) suggested this when I had the first eye done, and we really think it helped in not having a massive amount of scarring. Check with your ophthalmologist first, though I doubt it would be an issue. (Also I'm pretty sure Vit C is used by the body in collagen production).
If you'd like I can still see if I have my instructions and double check the 3 or 5 days thing. (Still pretty sure it is 3 days).
You were good procrastination too, in the sense that no one gets that the fluro lighting on campus makes it hard to do a lot of computer work, and then sitting in the daylight is hard because that changes depending on the clouds /time of day. It just made me realise that my keratoconus affects me more than I used to think it did.
+hobsquabble Thank you so much for sharing your experience with cross linking. This helps me alot in understanding what to expect as I move forward in my treatment plan. it sounds to me that the pain associated with cross linking is similar to the transplant but perhaps a bit sharper. Also it seems that there was more medication involved with the healing of cross linking. I hadn't even thought that there was risk for scarring with cross linking. I appreciate knowing this as I am sure it will be helpful in healing properly.
Dr. Brian Boxer Walcher, in Beverly Hills if you don't want a transplant. Just had it done and it works.
How many procedures did you got and did your vision improve at least a little bit. He offered me three c3r, intacts, and ck which is a total of 30 grand but that's only for me to use glasses lol.
I am a karatoconus patient . i am not comfortable at contact lances . but do not want to go cornea treansplant i am 29 Now . karatoconus is bad deases .
I have them too both eyes. I wear GP contact lenses for almost a year now. Wondering if pinhole glasses does work and if their worth it ?
I haven't personally used pinhole glasses but I know that using the pinholes in office can help clear my vision, though for me I find it somewhat distracting trying to focus on a hole to look through. Hopefully someone else here has had experience with the glasses that can tell you their effectiveness.
Does the crosslinking restore any former vision... Or is it more about not letting it get worse?
21 and just got diagnosed yesterday, my left eye is much worse then my right but can still see reasonably fine so far. I'm seeing a specialist for treatment on the weekend. My question is does this effect the appearance of my eye, like will it look very gross abnormal from the fount compare to normal eyes.
No, it won't. From some angles, change may be noticeable in moderate to advanced cases (look up Munson sign).
to the average observer you eyes will look no different. to the doctor the shape of your eye and potentially some scarring can be observed by an optometrist. It may cause some cross-eyedness or you may experience some slight twitching from time to time. but you're eyes will not change in appearance to the naked eye of an observer.
DanDaMaN95cov I'm 20 and was diagnosed in July last year. My left eye is also much worse but both are the worst he's seen. I can't do lasik Bc it may make vision worse. Go feb 6th to see my options. Maybe Gas Permeable contacts or cornea transplant. Wish you the best of luck that there is a fix for you.
DanDaMaN95cov same
Hello, can you please update if you had your treatment. Thanks. I totally agree with you I hate the eye chart too, its the same with me.
I will make an update video sometime next week.
My name is T.kishan kumar from India. i have keratoconus and i'm 21 , now i have used RGP type contact lens, but i can't struggling with as, i can't drive car & bike at night time,and travelling is hard, so i need complete solution for this problem. Expecting your valuable reply.
Hello, I wish i could give you more insight regarding night time driving. however, I think asking your doctor about that would be best as I am not a professional, I am only able to speak on my personal experiences and am not qualified to give medical advice. In regard to the RPG contact lenses, I found them to be very uncomfortable and was only able to wear them for a couple hours. I later switched to scleral lenses which were much more comfortable.
Before the diagnosis of keratoconus did u use glasses??
There is a new fda approved procedure ---crisslinking and intacs. I did these on my left eye 6 months, it seems it is working, I see improvements. I just hope this fixes it. Praying for everybody here who has Keratoconus.
Got my cross linking done Wednesday, first 2 days of recovery was painful. But was worth the £3,150 especially as we are not the richest of family's. 🙏
i m lucky, 350 pounds for both eyes in india
Fair enough, if I didn't go private I would of had to wait another year but it would of being free because of the NHS.
oohh free...
Perks of a developed country
😯
do you still need glasses after the x link
Yep, but they said if I wear contact lenses their is a chance it could re-shape my eye.
hey.. i have keratoconus..my eyesight improved a lot after crosslinking..but i saw further improvement in my vision after taking vitamin d supplements..i had my level tested and found it to be really really low :)
+Ameera Yusuf Thank you for your Input! I have been taking a multivitamin with zinc to help the healing process along. However, Im certain my vitamin D levels are low. I'll look into starting a vitamin D regimen once the sutures are removed.
+Kelly McEwen hey dear..let me know what happens:D
plz share me from where you did teatment suggest me plz if u r pakistani
Ameera Yusuf I read this online on a lot of forums of people taking vitamin D3 and it had really helped improve their keratoconus to the point it's regressed,there's also studies from the 1938s supporting this, I'm convinced and have started taking vitamin d3 1000iu
Is it possible poorly fitted contacts can trigger this..? Im 35 and started using contacts 1.5years ago the optician said the contacts weren't a great fit and now iv been diagnosed.
I failed my vision test for the dmv and have to see a eye specialist I’m just worried I won’t get my permit to learn to drive at all. I have keratoconus in one eye but yeah I just hope I can drive..
My optometrist said to me that the causes you have mentioned are not real causes, only the ways to speed up the development of keratoconus if you have genetic predisposition i.e. thin cornea. I don't know if this is completely true, but in my case I have probably damaged my cornea two years ago by rubbing my eyes too much and now I have similar symptoms to those of keratoconus - even when wearing glasses with full correction I see triple or more images on each eye separately. It is making me nauseous, depressed and after 3 years of studying with an average mark of 9 I'm failing this year and I can't even repeat the year because I finished less than half of my subjects. Sorry I had to write this down somewhere. :)
Thank you for sharing your story, I find it interesting that your optometrist totally discredits the other theories of the cause of KC. Im sorry to hear of the challenges you've been dealing with, I know KCcan make school more difficult, I plan to upload a video about my school strategies with KC soon, but I recently broke my computer so it might be a few weeks.
Well, he likes to use a word "genetic" quite a lot. :) When you fix your computer please upload that video. I would really like to see it and I think it will be very beneficial for many students suffering with KC.
Cheers! :)
"totally discredits..." No one knows what causes keratoconus. One thing is for absolute certain: Rubbing your eyes doesn't "cause" keratoconus.
Some evidence supports defects in superoxide dismutase.
Hi Kelly,
First, I can.t tell you how helpful your videos have been! I just received my diagnosis this past Wednesday. They are recommending a transplant in my right eye and Cross Linking in my left eye. I honestly had no idea! I expected to get a topical cream or something because my mom had noticed a white spot on my right eye. We expected it to be an ulcer or something. We were hit like a ton of bricks with this! I think my left eye compensated so much for the right that I really didn't noticed a great difference. Once in a while, I thought I needed to wear my glasses more because I noticed more of a blur, but certainly not to this extent! The past few days have been a complete whirlwind. Your videos have brought me the most peace thus far. Do you have any advice for someone that is just starting to learn about Karatoconus? My feelings about the whole thing change hourly. I was in such shock at the doctor's office, I couldn't think of many if any questions to ask. Now that I have a basic understanding, the feelings of fear are somewhat leveling, but I still get random extreme feelings of fear. The doctor made it sound relatively routine, but it certainly is nowhere near routine, but it certainly isn't routine to me. How is your healing process going? Have you had the Cross Linking yet? Thank you again for taking the time to educate me!
+Andi Pitts Hello Andi, I’m so glad my videos have been able to help you! It warms my heart to know that you have felt more at peace because of them. I can relate so much to what you are telling me about your keratoconus diagnosis. I too was caught off guard by the diagnosis and it is completely normal to be feeling a whole range of emotions. I was in denial for so long about getting a transplant, partly because the doctor who first told me was rather cold and calculated about the situation. So, my first bit of advice is to make sure you have an ophthalmologist that you’re comfortable with if you don’t already. Your doctor can make a huge difference in how you are feeling in this situation and through the treatment process. Second, when the doctor tells you about the aftercare of a transplant it sounds much more frightening than it really is. Not all experiences are the same, but for me I was off the anti-rejection meds within two months (and have not experienced any problems being off them). I think finding a community of people to talk with about what you’re feeling is essential to your mental well being also. I personally went through it alone for the most part and I know it was hard for others to relate. Honestly, I’ll be happy to help you with that in any way possible as well. These videos have been just as much help for me to express my feelings even though my intention was to help inform others about keratoconus. I suppose a good question to ask is, what is causing you the most fear in this process? I know it can be a number of things, for me it was both the fear of it affecting my ability to create sculpture and fear of the surgery and recovery itself. Even later on, after I had embraced my keratoconus as part of who I was, I was afraid of losing my identity. The healing process has gone very well, I have been able to see an improvement in my vision and any discomfort associated with the surgery was gone in less than a week. I still have stitches in my eye therefore I am unable to receive a new eyeglass prescription. My next appointment will be in a couple months, at that time the doctor will asses when they might be able to start removing stitches. I have not yet had crosslinking however, I will definitely follow that process and recovery on here when the time comes. I will say that process has gone a bit slower than I was expecting, I initially thought I would be getting crosslinking last month but I have yet to discuss it with my ophthalmologist. I will discuss it with him at my next appointment and talk about it in my 4 month follow up video afterwards. I hope this information has been helpful and I haven’t just been rambling on. Please don’t hesitate to let me know if you have any other questions or comments as you continue in your keratoconus journey. I’d be happy to help :)
+Kelly McEwen
Kelly,
Thank you so much for your caring response. Let me give you a little bit of a background on myself which will also help better explain my fears. I am 30 and married with a 2 year old son. I currently stay home with my son. I have experience in the world of disabilities, both personally and professionally. I have had Cerebral Palsy since birth and walk with forearm crutches. I understand your fear you mentioned about Karatoconus being part of your identity. I would likely feel the same fear if someone were to tell me they could completely cure me of CP.
Before I had my son, I received an Masters Degree in Social Work and worked for the state Vocational Rehabilitation office, where I helped people with various disabilities find jobs. However, my experience with visual impairments is very slight and it is a whole different story when it’s me!
My greatest fear is the possible fast progression of the Karatoconus. Since this last appointment, I have gathered up two prevision eye glass prescriptions, one from 2004, when I was 18 and one from 2009, when I was 23. They were done at Sams Club and Walmart. Both of those prescriptions appeared to be very mild, so much so that I didn’t wear my glasses very often at all! This last prescription was very different. The right eye was not correctable, hence the recommendation for the cornea transplant. They were able to get the left eye back to 20/30, I believe. What is bothering me the most is that from what research I’ve done, Karatoconus usually starts during adolescence, yet I am WAY past that stage of my life and am just barely discovering that I have this condition and that it is fairly advanced.
One more fear that keeps creeping up is the pressure changes in the eye when bending down. I plan to use my crutches all the time for a while to try to prevent unnecessary falling. The key word there is try. Sometimes things happen and I can’t help it. I read somewhere that with the new transplant procedure isn’t as concerned with the bending concern because of the way the laser works. I’m not totally convinced that it isn’t still a concern though.
Fortunately, I don’t drive now, so there won’t be many changes for me there. I have a great support system with my husband. parents and you (THANK YOU!) I am slightly concerned about my ability to return to my normal of regularly caring for my son, but it sounds like you returned to a relative normal within a couple weeks. Is that accurate? I’m sorry this is so long. Like the videos are helpful for you, I think writing out my fears is a form of comfort to me right now. Thank you again for all of your advice and caring thoughts!
Andi,
Thank you for sharing your story with me. I am very inspired by your resilience and passion for helping others. You have given me greater insight into what you may be feeling in this moment.
When my eyesight first began changing I was getting my prescriptions from eyeglass world. Though the employees there have proper training they had less knowledge about the disease, it wasn’t until I went to a different eyeglass company and an ophthalmologist that I was diagnosed. This may have been a similar situation in your case, though the employees at Walmart and sams club had the skillset to prescribe you eyeglasses they were probably less knowledgeable about keratoconus. Keratoconus is progressive so it is understandable that your vision has deteriorated. From what my doctors have said and what I’ve read the progression of the disease has a tendency to level off or stop by around age 35. Have you seen an ophthalmologist or was it an eyeglass company that recommended a transplant? There is another option called intacts, which is a plastic ring that is inserted around your cornea to “reshape” it to a more normal structure. This was not an option for me because my cornea was too scarred and thin.
As far as bending down there is a small period of time where you will need to refrain from it. The laser as far as I know doesn’t change this fact completely but may reduce the amount of time you are to remain upright. I had the laser procedure myself, the main benefit of this is due to the zigzag shape of the incision. Both your cornea and the donor cornea are cut to the same shape. This creates increased surface area and a perfect match, and therefore a stronger junction. For me, I was able to bend down a week after surgery. Which should be dedicated to recovery as is. Hopefully, you are able to receive help caring for your son during that week. Also, the pressure change that continues for a bit is associated with the post surgery medications. After discontinuing their use your pressure should return to normal.
I’m sure you’ll be able to return to your normal ability to care for your son. I was able to return to normal activities about a week post surgery. The main sustained changes (for about a month or two) is taking the anti-rejection meds, wearing an eye shield at night, and not being able to lift more than 20 pounds. All of which after 2 months are no longer necessary for me, though the weight limit is now 50 pounds (this is so you don’t cause your stitches to break)
No need to apologize for the length of your response, I’m glad to help.
Kelly,
I've upgraded to a bigger computer monitor that I can see much better, so hopefully that will reduce the number of repeats and typos I have in my messages. :) I did go to an Ophthalmologist this time. From what I understood from him, my case is too far advanced for the intacts as well. My right eye has the corneal scarring that is pretty prominent and the left he referred to as moderately affected. Fortunately, I am scheduled for a second opinion with one of the best eye institutes in the state, if not the best. I also have my Pentacam test scheduled for Thursday with the doctor who diagnosed me. We are making forward progress, it's just SLOW! Tomorrow will be a week since I was first diagnosed, but it feels like a month ago!
Thank you for clearing up the pressure questions for me. I think the worst part right now is simply waiting. My mom (who is basically my right hand woman) and I keep going back and forth, if I'm scared, she's not, if she's scared I'm not. I dread the moment when we are both fearful at the same time!
Please know that I am happy to be a support for you as well. You are much further along in the process than I am, but hearing your experiences, both good and bad help give me a glimpse of what I may experience in the near future. I hope you are well. Thank you again!
Andi
Hello Andi,
Its good that you saw an ophthalmologist and are also getting a second opinion. As I noted in one of my previous messages it’s a good idea to find someone that you are comfortable with in this process. I understand how slow the process can feel, its never fun playing the waiting game. Its good you have your mom to support you, hopefully talking to your doctor will help ease the fears of both of you.
Thank you for your support as well :) I greatly appreciate it, talking to you has been beneficial to my healing as well. I’m also glad that my videos and comments have helped to give you a glimpse of the process. Good luck with your upcoming doctor appointments! I’m sure they will go splendidly
She looks so attractive!
im 17, got diagnosed last year on my right eye. Everythings completely blury, so far i can see and mainly do see from my left which isn't showing any progression of keratoconus (very mild) so it does not affect my every day life as of now. I live in the UK so i can get the corneal transplant any time for free, though im not sure of the consequences because im only 17 and still in the middle of exams and hope to go off to uni. I was told by the doctors that by doing the surgery, it could result in further surgeries down the line and its a long recovery period. This may sound silly, but would it affect me doing sports? I aspire to become a proffesional athlete and would like to now if id have to tone down the level of exercises i do after surgery? (i do taekwondo and plan on participating in world championships, so would like to know of by doing the surgery id have to stop taekwondo)
Hey what you have gone through its the same that all of us have gone through even I went to the doctor and most of the doctors have given me glasses to wear for their lengths to wear but at the end I came to know about care taken as I did much study on TH-cam and looking at the videos and finally I got Intacts and c3r in my left eye last year and recently this Saturday I had c3r in my right eye
So am I vision in left eye it fluctuate sometimes it's very clear and sometimes it not it's not clear sense it's only been a year so let's see how far it goes but I am satisfied with the c3r in Intex and recently I have done it for my right eye and its as if has only been a week so I hope it gets better but I am happy for my right eye because I did it only so that c
Hi guys. I have kareto too. I'm 15 and my whole life is art. I'm the top in my art class but I've never told my art teacher. It makes me very depressed to think that I'll need to go under some stuff with my eye. I went to the best eye specialist I know. They told me that I don't have Kareto yet, but it is forming out. They also told me that it can re-appear when I'll be 21. I'm a bit confused now. I got hard gas permeable contact lenses but i hate them. They get stuck in the corners of my eyes and it stresses me out. I only wear them like twice a week cause of it. I don't want to undergo surgery. If anything changes or damages my vision I would rather commit suicide, I'm terribly sight dependant. And scared. Its good to know that there are more of you who share this with me. Although I'm kinda sad for you all.
Hello, I can absolutely relate to your concerns. I am a sculptor and went to school for art. When I first found out about my Keratoconus I too was worried about how the treatment options would impact my art making. Fortunately, since your KC hasn't advanced you have many treatment options available to you. As far as I know cross- linking is one of the best ways to keep it from progressing, if that is your main concern. Or at least for now, it is the option for prevention of progression with the most research behind it. I understand that it all can seem so scary but just know you aren't alone. Please let me know if I can be of anymore help to you.
dude i was diagonised with keratoconus when i was 17. Like u i had to go under several eye doctors who cudnt identify my disease..they provided me wth glasses rising powers upto -9 to -10 in my right eye . Fortunately i met a dr. who was a cornea specialist she asked me for several tests whose results confirmed i had keratoconus..
the condition of the cornea was not good enough to keep untreated or corrected wth glasses.. i went through 2 successive C3R oprtns in each eye in two yrs.....
now i wear rigid gas permeable lenses in both my eyes...i know it hurts ur eyes but trust me...if u wear them periodically with proper handling and cleaning.. ur eyes wud get adjusted to this foreign substance... it wont hurt..
I am from India .. i dont know ur nationality but there is a very good eye drop named GENTEAL TEAR DROP sold in our country manufactured by NOVARITS .
This drop can be administered to any person either having this disease ( even wearing ur lenses) or to any normal eye...this drop reduces the pain or the prickling sensation u feel wearing those lenses from minimal to no pain at all :) ....
since our disease can nly b controlled by c3r oprtn... the permanent way to get rid of this problem is by having a corneal transplant surgery ..but as ur corneas r progessing slowly to keratoconus... u can go for this option when ur cornea still degrades after years of c3r oprtn :) stay happy and best of luck for ur life in art i am an undergrad student of geology i suffer more than u with a regular xposure to rock mineral dust nd huge stress when i do sampling... so dont give up :) .... remember people wearing lenses have a sharper sightedness :P
I have this disease and I wear scleral lens
Michelle Fitchett are the comfortable and how is your vision
Michelle Fitchett i wear it too. They are a little bit better
What are those?
Does scleral lens help as well? Especially while you are on stage 2?
My doctor told me that if its keep progressing they might do a cross linking surgery..but i have not tried scleral lens before
Me too
I have keratoconus and im 21. I was told I had at the age of 17 but could've gotten it at the age of 15. I have Rigid Gas Permeable contacts but I hate wearing them because it made me so uncomfortable. I havent seen my optometrist for a while. I want to learn how to drive but I am scared too.
+iFlyUp I would suggest checking out other options for contact lenses if possible, I know they can be expensive. I also wore RGP lenses and found them to be uncomfortable. I eventually switched to scleral lenses, which gave me the clearest vision and for the most part were comfortable. they did however cause me some occasional irritation when removing them. I understand your fear in learning to drive, driving can be nerve wracking especially if your vision isn't the best. I did have my permit when I was 18 but was too afraid to take the test for my license ( I can make a video on this if you would like more information, or I can talk about it in my Q&A video. Just let me know which you would prefer) I also plan on creating videos when I start driving again about that experience (I plan on starting to drive again in a month or two) I also notice that you have asked some great questions for my Q&A video, I look forward to answering them for you. I plan to have the Q&A video out in the next few weeks.
I have karataconus myself and my right eye is really bad I have slight double vision in my right eye too
pinkbeatle2012 same
Do you have any floaters?
Got it unfortunately... Had Cross Linking and laser in both eyes. Implant in my right eye. Terrifying, wish I found this a couple of years ago
Well done Kelly! I was misdiagnosed multiple times kept insisting that there was a problem, you are a STAR✨🌟💫Wendy K in Toronto, Canada
Thank you very much Wendy :)
Hey guys, I’m from Germany and I wore for about 12 years now hard contacts, my visual sights is now at ~70% right eye and ~50 left one. Without hard contacts I can barely see (about 0,1% left and 0,01% right). Today I got the information that I’ve done everything wrong with hard contacts...I just don’t know what I should believe now...I went to about 4-5 special Clinics but that was the first one who said I should’ve had an operation about 7 years ago and now I’ve to get an PKP operation...it’s rly hard for me now to accept these facts...I still can’t believe I’ve to get the op in less than a week. Anyone of you have done the same operation and could tell me what you’ve done after that? I got told that I can’t see for atleast 2-4 weeks, also I should not wear my contacts which mean I’m blind for these days :(
How are you now??
@@Ranveersingh72682 I’ve had 7~ operations and still have issues with my eyesight + I’ve now issues with my tear fluid :) I can’t wear hard glass contacts anymore and had to switch to scleral lenses which isn’t great either.
But I could accept these problems and started working again.
@@Yamiyo20 what is your age bro and i hope you get better keep fighting brother never lose urself
@@Ranveersingh72682 I'm 26 now :) thanks, i try my best not to ^^
It is common in North most part of India in colder region
But how..
Give your experiences.
And how has recovery been for the transplant ... can you play sports?
I see that most time the keracotonus person have beautiful eye
I've had cross linking done 9 years ago and my eyes seem to be ok now.
i had lasik surgery because i was quite short sighted and after a year discovered i had keratoconus....had surgery for that but still cannot see very well and i'm quite disheartened
when i said surgery i meant cross linking...they basically place riboflavin ( b2 vitamine on your iris and you have to stare into Uv light for 30 min) ... it was ok..not painful during the procedure but afterwards(first night i mean) it's really bad, as if you 'd have sand in your eyes...
+Ingrid Kiss Unfortunately as far as from what I have been told cross linking is only to prevent the disease from further progressing and doesn't correct for vision. It's really good for me to hear your experience with cross linking, Thank you for sharing. my fear has been that afraid procedure itself will be very painful as they had described it as shedding the outer layer of skin on the eye.
Nope...you don't feel that because they numb you with some eyes drops...I walked out of the surgery pretty content kind of high on adrenaline but at night I couldn't sleep at all so it's best to have someone with you to help ...I got really teary and was trembling from being tired and from the pain (it's more of a burning sensation) and I'd seriously recommend getting something to calm you down ( like a sleeping pill or something homeopathic with calming effects)...before and after the surgery the nurses were handing out xanax pills but I didn't take them...and most importantly make sure you go to the bathroom before ( they tell you the procedure is short but 30 minutes of staring into blue light feel more like an hour...)
+Ingrid Kiss Those are some great suggestions, thank you. Staring into a blue light for 30 minutes sounds like it would feel like an eternity. did you have to sit up during this or lay down?
Also I thought the cause of my Keratoconus was when I was in year 7 or 8 so about 3 years ago I got poked in the eyes really hard and I thought I got a lazy eye. But guess we just have to wait until they find the exact reason of how it's caused.
I agree, I also wish at times that we knew the exact cause of KC
They say it's from allergies.. I believe it is caused by an immunizations
Hi, I think I have Keratoconus from the symptoms I've noticed in my vision. I've had this since I was around 13 years old and through time I noticed the condition progressed. Right now I'm 17 years old, and I had never really talked about this to my parents because I'm scared that they might get too worried about me. I never even went to any eye tests because it really scares me. My condition really gets me depressed and it really concerns me. It's hard to believe that this is a rare condition and I just think to myself "Why me? :(". I dont know what to do... I really care about my vision, I would really appreciate any suggestions you could give for me.
Hello, I'm sorry to hear that you have been struggling with this. I understand how frightening this can be. First, it is important that you have your vision checked, it is possible that you don't have keratoconus. Most often KC requires a diagnoses from an optometrist or opthamologist. I understand you don't want to worry your parents but i think they would be more worried if you continue to live with symptoms and don't inform them. While KC does make some things difficult it is a condition that many people live with and are able to treat. If it does worry you to tell them you are at an age where you can set up an eye appointment on your own, however i am not encouraging you to do this without their knowledge. It is very important to have a community of support from friends and family with this condition, if it turns out the doctor says you have KC it will be nice to have them there with you. I think that is my biggest suggestion first, is to arrange an eye appointment to see if it really is KC, I think this will help ease some of your worry. It may simply be correctable by contacts and glasses. And if it is KC its best to find out in the earlier stages of it. Also I am always here to lend my experience as support to you.
Thank you, I really appreciate your advice. Actually, I've been researching about eye conditions on my own for a couple of years just looking for answers or some explanations to my vision. So far, I've learned about Astigmatism, Visual Snow, Keratoconus, and as well as those other terrifying diseases that I fear to mention :( .
The symptoms that concerns me in my eyesight are glares and halos that I saw around around bright lights, experiencing double/triple vision when looking at bright stuff and seeing a fairly small amount of static in dark things. My right eye is just slightly blurry than my left eye, although, I can see fairly clear from a far distance but still having a little hard effort to recognize letters or numbers from far away. I especially hate late night classes because it makes me walk home through the dark streets that were lit up by really short street lights that bothers my vision.
Researching about these things online is not easy because it's quite unnerving. It makes me reflect on how vulnerable the human body is, but it's still an amazing biological thing. Sorry for widening the topic here :P
By the way, thank you for the suggestions, I'm really happy you acknowledge my comment, at most times I felt alone about this, so I'm glad I'm letting this off my chest :)
I still would suggest that you see an eye doctor to receive a diagnosis. I understand why you have been wanting to research it online, uncertainty can be just as bad as an affliction at times. However, you may be making your worries worse. this is really common when googling symptoms. to get the proper diagnoses and learn about whatever treatment that may need you really need to see an eye doctor.
The body can be fragile and vulnerable as you have said, and yes also amazing in all of it's complexities and inner workings. on the other hand, our minds can be quite resilient and are equally amazing in their complex and unique nature. This has been a great way for me to cope with my impairment. My "body" may be weak but it has given me the opportunity to strengthen my mind and discover my identity as a complex individual.
You are more than welcome, I'm glad my experience can be of some help :) part of me starting this playlist was because I wanted to create a community of support for people with shared experiences. I know how polarizing this all can be and also have had times where i've felt alone on this journey. Feel free to look me up on facebook if you feel you need someone to talk to that can relate to your circumstances.
Yes, I'll get to the doctor in sometime I understand. And sure, thanks for keeping me company :)
I have this. it sux. the contact lenses work well but are very uncomfortable. I can still use glasses but I hate wearing them.
same here, i wear contact lenses just for one eye, its terrible, i wear them just at college when i need it... but i still have problems puthing them on eye, hah im scared of losing them, especially when it cost 400euros for one eye
Yay i did the transplant today 😀
my eye is still covered it doesn't hurt at all lol but it feels as if im wearing a contact lenses in my eye which is of course the new cornea but i forget about it and do whatever.
i didnt look down i used my iphone lol not sensitive to light at all here i am sitting on bed and lights surrounds me all around.
And yh im starving 💔 lol they didnt serve any food since 12 last night now its 8 pm hehe.
im over excited and happy and cant wait for my eye to get fully recovered..
And there is a foggy vision in my eye after surgery idk y is that normal?
Yay! congrats! :)
Your eye may also feel like you're wearing a contact lens because you very well might be. oftentimes a bandage contact is placed over the eye to protect it until they take it off during a follow up appointment. I will say try not to over do it. you probably shouldn't be reading on a computer. Like you, I didn't feel much pain the first day but I did too much because of it. Also it is completely normal for vision to be foggy after the procedure.
+Kelly McEwen they told me its ok to use computer read books or use the iphone too but wisely hehe. i feel tiny sharp feeling in my eye but i wouldnt call it pain lil pain in my head tho
Bad taste in my mouth lol
I put cortisone and anti biotic eye drops i returned home now. They told me sleep whatever side u like when u sleep dont take ur eye cover so u dont rub it while u r sleeping they also said dont carry babies lol u have no idea how many cornea stitches been damaged by children just avoid them glad im not a mum yet lol they said if u get ms relapse get 1000 mg cortisone it would helt recovering the relapse and cornea too but so far i got no relapses.
They said i dont neex glasses after surgery but i bought sunglasses and they were a huge relief thanks to ur videos ;)
i have it and it sucks I am going to get fited for contacts
i also have keratoconus and im just 16.I have to wear contact lenses and the doctors are thinking about "crosslinking" ( I am german so idk if thats the proper english word for that).But hey there are things out there that are worse than keratoconus ^-^
I will be getting crosslinking next month. I will make videos on that process as well that can hopefully be of some help to you.
I have had CXL done in both eyes and I can honestly say that there is nothing to worry about and would 100% recommend it to anyone with KC,there is no pain whilst the procedure is being done the worst part for me is when the doctor kept pouring water on my eye(I think it was to help cool it down as well as cleaning)I had pain the night after the procedure but the next day it was fine and I havent noticed any difference in vision or shape yet but the CXL is not about changing the shape or vision its about stopping progression best of luck you will be on your way to recovery in no time :)
how much time does it take for bluriness to go after cxl?
also does cxl leave any scar...can a random eye doctor tell u hav been operated upon?
thanks....
doc told me in certain cases it can help change the shape of cornea,and sometimes it can reduce ur specs power too!
I just got diagnosed with it on my right eye too
I am so confused
keep up the good videos
it's really helpful to see how u get on il be monitoring
one of my eyes is almost 20/20 am praying it holds out
+tevez2city Im glad i can be of some help! please let me know if i can clear up your confusion in any way.
I have it my right eye is useless... waiting for my sclara lenses to arrive.
I have the same eye condition since 1990
hello kelly i hope you are fine plz tell me about your eye glases number and and you wear contact lenses ? how your expierience with keratokonus
Hello, I am unsure of my eyeglass prescription at the moment because I have yet to get a proper refraction post-op. I have won contacts in the past, but have not yet since my transplant. I will let you know as I find out more information :)
ok are u satisfied with your eye vision mean how much your vision is imroved using contact lenses
The contacts did help quite a bit with making my vision clearer. the type of contacts that have worked best for me are the scleral lenses.
ok thanks alot have you facebook account ?
Did glasses help you??..and before keratoconus did u wear eye glasses?
how come you wear glasses? don't you wear sclera lenses?
I did wear sclera and plan to again in the near future. In this video I believe It was a little over a week until my surgery date and I believe you aren't supposed to wear contacts for at least a week prior, I stopped wearing mine a month prior to the transplant. Now I am not wearing them because I just had cross-linking a few months ago and need to be refitted and refracted for a new pair. hopefully that will happen within the next month or two.
Thank you for answering! I thought it is not allowed to wear glasses with keratoconus...
NikosTH4I I have keratoconus and wear glasses. I get pretty good vision with glasses I'd say almost perfect.. My prescription is +2 -5.75cyl similar in right eye. I tried rigid contacts hated them too unstable. It depends how severe it is.
please help me i dnt know what to do
what would you like me to help you with? as far as your eye pain I would suggest talking to your eye doctor about it. Also try not to go too long on the computer or tv without taking a break.
had my cross linking 1 week ago. still see everything with a "milky" shade
Thank you for sharing, this is good for me to know. I was trying to decide whether or not to get crosslinking while in school or wait until winter break.
1 week and a few in :
- doesn´t hurt any more (just sleep 3 days and u won´t feel much of the pain)
-still a bit of shade
-i might have lost a bit of vision ~ -10%(feels like it ^^) i was at 50% vision befor
i get cross linking right before the final exam, when i should graduate highschool, i did it in 2 weeks for both eyes, first 2 days of recovery its hard, you need to sleep, cant suport the light, but then should be fine, i had some problems with one eye because after crosslinking while i was sleeping my contact lenses to protect the eye dropout, another 2-3 days of pain:D be careful
they told me to not use contact lenses becasue they have a higher risc for infection
lol, i think contact lenses its the only option for that, when first got to a medical center they give me glasses but i couldnt see anything with them, then i go to a special clinic and i get the result for keratoconus.. then i did cross linking and they told me the only way i can see its to purchase special contact lenses, but i didnt have the money then, and i purchase them one year later, without my contact lenses ( i have just for one eye) my vision is 40-50% left eye, 20% right eye
I also have keratoconus and have the intacs rings
how have they worked for you?
I just find out I got it not even a year ago
Corna cross Ling has just been approved Jan.2018
Found that I have keratoconus in both eyes yesterday.
How are you doing with it...?
I got my diagnosis less than 2 weeks ago and I'm freaking out 😞
@@suzawilo I know the feeling 🙏 I found out I had KERATOCONUS about 5yrs ago..i ended up having a brain aneurysm and ended up in a coma for 3 weeks because of not having my left contact lens for 3months.. no oxygen was getting to my brain through my left eye and because of greed from my eye doctors secretary ,I almost lost my life.. keratoconus can be very serious and fatal without treatment!!
I have keratoconus too.
I AM SCARED AFTER WATCHING SURGERY
Im 20 years old and i have keratoconus, its terrible....
Marius Radu 5
5 what?
And btw it was full anesthesia...
I regret rubbing my eyes only more frequently and harder the past year since I got regular astigmatism...now I got irregular astigmatism due to mild keratoconus yay! fml
lol exactly my story too.
very helpfull
thank you so much
btw
would totally date you☺
i just got crosslinking done in mexico 6months ago $500:) going to get intacs soon through insurance, hmu doll
max torres , did the cross linking work good for you ?
Pretty girl
hmm painful