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Five facts about keratoconus 👀

Keratoconus is not a battle to be won, it's a weight to carry forever

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HELP! I have been given my scleral lenses but haven’t been given saline! (UK)

Hello I have been given my contacts and they ran out of saline hence why I don’t have any. I cannot find preservative free saline anywhere - please can UK based people give me some recommendations?? And where can I buy it?? submitted by /u/cheetoburito [link] [comments] https://www.reddit.com/r/Keratoconus/comments/1faa3ix/help_i_have_been_given_my_scleral_lenses_but/?utm_source=dlvr.it&utm_medium=tumblr

My scleral lenses are not comfortable and this is what my optometrist sent me, what should I do?

Dr. Lisa reached out to our contact lens rep where your contacts come from and they cannot make any more adjustments to the contacts unless a new order is started again. The warranty time frame has passed for adjustments. submitted by /u/PureExistential [link] [comments] https://www.reddit.com/r/Keratoconus/comments/1f9wbea/my_scleral_lenses_are_not_comfortable_and_this_is/?utm_source=dlvr.it&utm_medium=tumblr

Anyone had PRK and now see smaller/larger in one eye and than the other eye?

submitted by /u/PureExistential [link] [comments] https://www.reddit.com/r/Keratoconus/comments/1f9urb6/anyone_had_prk_and_now_see_smallerlarger_in_one/?utm_source=dlvr.it&utm_medium=tumblr

Having my BF who has KC meet my parents, please advise

Hi guys, I am 26 (F) and my bf 27(M). He’s had KC for the last several years, recently he had a surgery done where they had inserted lenses/contacts into his eyes, I’m not sure what the surgery is called. The recovery process was painful for him, it made me really sad, I kept coming back to this Reddit page to figure what ways I could help him. A year later, his recovery has been better but he says he has lost 70% of his vision since he initially got diagnosed with KC. I belong from South Asia and here, we have to get our parents approval before we can think about getting married. Parents tend to analyze important traits of your soon to be or might be husband like character, financial stability, family values, religious beliefs etc. Because my bf has lost 70% of his vision, this might make it harder for my parents to accept him as a suitable husband for me, their reasoning that husbands are the providers ultimately and even if you’re earning now, you will have to take a break once you have children. He works remotely, can’t drive to work because he can’t drive or see clearly at night or in the evening time when there is less light and generally close to 5 or 6, the suns going down and it becomes harder for him to see, and most jobs here are either 9-5 or 9-6, so this gives him very few earning opportunities as he is only comfortable with remote work. But what happens when this job ends? Not easy to always find remote work that pays you enough to make ends meet. I need to convince my parents to accept him as my future husband, there’s no one I’d rather be than with him, but I can’t upset my parents either, so I’m stuck in the middle. Is it possible for your KC to keep progressing even if the patient had the lens/contact surgery (dk the name) and can someone with KC ultimately go blind? Also please do lmk what foods are good to eat when you have KC or if there are certain foods that help better your KC. Thank you! submitted by /u/Medical_Opinion8120 [link] [comments] https://www.reddit.com/r/Keratoconus/comments/1f9sr2m/having_my_bf_who_has_kc_meet_my_parents_please/?utm_source=dlvr.it&utm_medium=tumblr

Together we are stronger, fiercer, and more powerful than keratoconus.

submitted by /u/keratoconusgroup [link] [comments] https://www.reddit.com/r/Keratoconus/comments/1f9sac3/together_we_are_stronger_fiercer_and_more/?utm_source=dlvr.it&utm_medium=tumblr

At my wits end. I don’t know what to do anymore. Please offer any advice

I have severe scarring in my left eye. Scleral lenses (iprint pro) no longer work. I’ve been fit about 20 different times for a custom lens(iprintpro) and nothing works. I am not a candidate for a corneal transplant because of unhealthy corneal tissue. I am at a loss for words and feeling defeated. submitted by /u/Active_Plant_2979 [link] [comments] https://www.reddit.com/r/Keratoconus/comments/1f9pygq/at_my_wits_end_i_dont_know_what_to_do_anymore/?utm_source=dlvr.it&utm_medium=tumblr

Tired eyes mid afternoon

Does anyone find they really need a sleep in the afternoon I wear sclerals and my day is 5:20 am wake up and lenses in. Drive to work for 6am Gym 6am to 7am Work until 3 pm mainly on a pc say 80% Get home by 4 pm - eyes are shattered Sleep for 20 mins Good to go until around 10pm 10:30 submitted by /u/stuaird1977 [link] [comments] https://www.reddit.com/r/Keratoconus/comments/1f9pk4p/tired_eyes_mid_afternoon/?utm_source=dlvr.it&utm_medium=tumblr

My first post here after ages of lurking, wohoo! I have quite advanced keratoconus, if that's even the way to describe it. Bit of a rant and sharing of thoughts, I guess?

My eyes are pretty messed up, can barely see anything really and without my scleralenses I only see light and shadows. With lenses, my vision improves immensely. It's still bad and I'm mostly deducting what the blurry shapes I see actually are, but its such a huge difference that honestly, I'm not too upset about it. There are screen readers, audio books, podcasts and accessible gaming out there. Adjustments can be made and life goes on. I'm thankful for the sight I have as opposed to upset about the sight I lost, I guess? I'm not happy about the situation but I'm also not miserable about it anymore. Its been a journey to come to terms with as its still progressing and I keep having to adjust to new normals which is often overwhelming but still like.. It'll be fine, you know? I guess the word is acceptance. I was diagnosed late all things considered (late twenties) because my vision started getting quite poor very early, in my teens. I compensated for so long that it just wasn't picked up by people around me, and when I said my eyesight wasn't good, nobody really listened. And since that happened I sort of just assumed I was overreacting and didn't do much about it until I moved countries and my GP pinged it. They yeeted me to an eye specialist. Things improved a lot from there, but I have a feeling I'll end up needing a transplant at some point either way. Not to keen on the idea but I've read about a lot of people having great experiences with having theirs done, ya live ya learn! I have my second cross linking scheduled in October. One step at a time! I want to say that I always get so happy reading that so many of you get to do like an early crosslinking and that things can be easily adjusted easily with scleralenses/glasses after that. That's amazing! I'm super happy for you! If you're lurking and not sure if you should post here to not - Please keep sharing your experiences (if you are comfortable doing so, that is), no matter what they are. Its always nice to see all parts of the spectrum here! If not, then keep reading about other peoples experiences! I genuinely believe that community is important when you get a diagnosis like this, hearing other people going through similar things can make a great difference when you feel like nobody around you understands or just.. don't get it. At least it has for me! I wish I knew about this place when I got diagnosed, I think that would have helped me a lot in not feeling so alone and confused about things. Anyways. I see you! Pun 100% intended. submitted by /u/Background-Soil8695 [link] [comments] https://www.reddit.com/r/Keratoconus/comments/1f9hjmf/my_first_post_here_after_ages_of_lurking_wohoo_i/?utm_source=dlvr.it&utm_medium=tumblr

PROSE Contact Lenses

I have an appointment at Keck School of Medicine at USC for PROSE contact lenses and I was wondering how much of an improvement in vision and comfortability they are. This is the last attempt to help my vision before getting a corneal transplant. submitted by /u/ResidentWallaby9527 [link] [comments] https://www.reddit.com/r/Keratoconus/comments/1f98dcs/prose_contact_lenses/?utm_source=dlvr.it&utm_medium=tumblr

Has anyone tried these eye drops?

Since having keratoconus and wearing scleral lenses for over 3 years now, I’ve noticed my eyes have gotten extremely dry and it seems that my current eye drops do not seem to help. So I currently use the refresh tears plus preservative free eye drops, but it’s a little annoying having the single use vials. I found these eye drops at Costco and was curious if anyone has tried them out. These happen to come in a pack of 3 bottles. I’m not exactly sure what lipid eye drops are but I did see that it is a lipid eye drop. Would also like to know if anyone has had experience with these type of eyedrops. submitted by /u/Friendly-Loquat5482 [link] [comments] https://www.reddit.com/r/Keratoconus/comments/1f95e6n/has_anyone_tried_these_eye_drops/?utm_source=dlvr.it&utm_medium=tumblr

About to have crosslinking procedure, best advice?

I'm about to have a corneal crosslinking procedure tomorrow for my right eyes. I'm very scared, and I don't know what items I might be missing in preparation for after the procedure; any quick advice before I go under the UV light and such? :) submitted by /u/BeetleBjorksta34 [link] [comments] https://www.reddit.com/r/Keratoconus/comments/1f9kfzc/about_to_have_crosslinking_procedure_best_advice/?utm_source=dlvr.it&utm_medium=tumblr

Many years of self doubt and now legally blind

**** Disclaimer: Not officially diagnosed as legally blind **** I feel like no one believed me. My journey as least for me started when I was eight years old. Every eye appointment,.I would say something was wrong and they just gave me new glasses. Only my mom believed me. College didn't change anything either. No one took me seriously at all. It was until I dropped out of getting an Engineering degree because I couldn't see the board and the paper was too blurry. In community college, I finally felt seen and heard. The optometrist finally gave me a referral to see a specialist. Then disaster struck, my left eye was so far advanced that I had to get a corneal replacement. My insurance at the time covered it, but I graduated with an Associate's in Graphic Design and school insurance was out of the question. I got back on my mom's insurance when I went back to school to get my Bachelor's in Mathematics. Met a wonderful guy and started skipping classes because of how bad my vision was and he walked me to my classes. I got my degree and saw another specialist my Junior year and I had to get cross linking in my right eye. A non-profit sent them the materials and was willing to pay the doctor's fees, but I never could get an appointment. Now I'm 28 years old and still need a corneal replacement in my left eye and cross linking in my right eye, but I'm underinsured. I wear a eye patch over my left eye, hoping to improve my right eye. It's no help though, I'm still squinting. Oh, I found it that my keratoconus is genetic. My mom has it but since she is older (60s) it almost corrects itself. She told me that no one believed her, so I guess I'm not alone. submitted by /u/beachside375 [link] [comments] https://www.reddit.com/r/Keratoconus/comments/1f9j7w0/many_years_of_self_doubt_and_now_legally_blind/?utm_source=dlvr.it&utm_medium=tumblr

Late Diagnosis Surgery Situation

Hello 31M and Diagnosed late at 30. I have a decision to make about surgery in my left eye and I would love to entertain any thoughts. I only have a year of regression data and it looks like insurance will not want to cover the surgery. The surgeon said he will make an appeal which was very kind considering the added workload. The kick is if I had been diagnosed early then there would be no question about insurance covering it. Insurance aside progression is slowly showing worse in this eye and recommendation is cross linking in one eye. The following question and possibly ethical scenario comes into play: * Do I pay out of pocket for surgery (we can take the hit). Fastest surgery possible considering regression (slow regression ultimately, not like when I was in my 20s). Possibly $5,000 * Do I wait a year of data collection for insurance to approve the surgery and have my vision be regressed ever more mildly? * Do I agree to a clinical trial for Epithelium-on Corneal cross linking. This would be “free” and get me cross linking immediately. Double blind with 400 participants. I could end up having the sham light exposure if I am part of the placebo group technically. If I get fake treatment and continue to progress 3 months later than I am eligible for a rescue treatment of epi on. At the end of the year I would be offered the real treatment otherwise. I feel like our flawed insurance system is punishing me for a late diagnosis and pressuring me into a possibly risky clinical trial. submitted by /u/Caver12 [link] [comments] https://www.reddit.com/r/Keratoconus/comments/1f9041i/late_diagnosis_surgery_situation/?utm_source=dlvr.it&utm_medium=tumblr

Any KC specialists in Colorado Springs or Denver?

Just looking for a good specialist to go to in Colorado. Thank you. submitted by /u/Street-Fennel5033 [link] [comments] https://www.reddit.com/r/Keratoconus/comments/1f9hi5h/any_kc_specialists_in_colorado_springs_or_denver/?utm_source=dlvr.it&utm_medium=tumblr

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