Who else has a severe form of Keratoconus? And how is life?

  1. Yes KC is frustrating trust me. But over the years I have learned to work around it. My husband is amazing and will constantly read subtitles without me asking. Over the years I stopped saying "what did that say.." because I felt like I was a burden. He caught on because I would become so lost. I hate losing some of my independence because I can't drive long distances or areas I am unfamiliar with. Forget driving at night, I gave that up years ago.

  2. Got diagnosed in 2009, wore gas perms for a few years, then no lens. Tried the scleral lenses and too uncomfortable. Dealt with the bad vision (legally blind in right eye, good vision in left eye) until 2014 when I got the transplant. Took a few years of recovery and a few different lens fittings but I got to a 20/60, without the lens. Work at a computer a lot, just learned to take breaks from screen to prevent headaches and strains.

  3. Being down about KC is pretty typical response. I’ve had the disease before CXL, intact and Sclera lenses. I remember gas permeable lenses that were terribly painful but allowed me to see better. I’ve had ivy back lenses as well and now Sclera lenses. I’ve had six cornea transplants in one eye and three in the other. On top of that I have severe glaucoma and swelling on my retina, but l refuse to let this disease define me. My point in sharing this is that feel blessed you have the technology that we do today. KC can be depressing but don’t dwell on it. Be proactive learn more about KC and the advances happening with helping KC patients. Just last week I was reading about an artificial cornea that has been invented. There are many things that have to be learned about it, but it shows the progress being achieved. Good luck!

  4. I was diagnosed in 1968 and 1970. I have lived a normal life. Graduated High school, college, got a masters degree, married in 82 and retired from my profession in 2016.

  5. I have just finished a career in computer science and yes it was somewhat a hassle but not impossible. I try to get by and live my life.

  6. Hey friend, that sounds difficult but like you said faith is key. Keep a positive outlook and try your best everyday because there's no point in sulking.

  7. Interesting. Never thought of this, although if I have my contact in my good eye and my bad eye doesn't have anything the contrast would be huge. Do you do this?

  8. I wouldn’t say severe but it has impacted my life drastically. I am currently 21 years old, i was first diagnosed for keratoconus when i was 18, where i was advised that i would need surgery but i’m still in early stages. So i took it lightly not knowing the seriousness of this disease and started my College. I am a Cadet Pilot and we get tested for vision every year and the requirement is a strict 6/6 on either eyes and 20/20 vision on both. Sometime during the course of my training, whenever i closed my right eye, i could see perfectly well, but when i closed my left eye, i couldn’t read very well, like shadowed writing and a halo of light. This had me worried and so in 2020 when i used to fly, i was due for my next medical assessment, i was asked to close my right eye and read the alphabets, i was able to read perfectly, but when i was asked to close my left eye and read with the right, i couldn’t read the last 2 lines. i was struggling, squinching my eyes, opening them wide open, raising my head, lowering my head, nothing seemed to work, i almost reached the breaking point and had tears in my eyes as my whole career flashed before my eyes, everything that i’ve dreamt of and worked so hard for is being compromised by this tiny, yet compromising factor. They ran a couple of tests and sat me down, and told me that i needed to search another career. I broke down, it affected me mentally and drove me into depression. I had worked all my life, spent all my money and time and effort, and it just got flushed down the toilet just like that. I frantically asked if there was any situation, to which he replied that it was late and none of the methods would make much difference. As soon as my flying was over, i flew out to see one of the best eyes doctors and got consulted for cross linking on both eyes. It’s been 3 months since then and i’ve been regularly having check ups and there seems to be no drop in eye power, and i consulted for a eye lens fitting and i could somewhat achieve 6/6 vision on both eyes, things are looking up and i’m much better knowing maybe i haven’t got it as worse. Because when i was at the hospital, i met with a 11 year old who had to get an eye transplant and still couldn’t see and had to be guided by his mother at all times, comparing with that, i’d say i’m blessed. And with all due respect, Fuck keratoconus.

  9. Without lenses I have 6/30 and 3/60 and with them I have 6/6 and 6/18. I can wear my lenses for up to 20h, which means no disco and no very late parties unless its in my home. Wearing lenses could have meant that I would have to change hobbies as I couldn't do stuff were I could loose a lense, but I wear swimming pool goggles in order to keep doing what I please. I also wear them outside when it's windy. I get teased and odd looks but I'd rather not loose my lenses and not get stuff into my eyes. Backpacking is also out of consideration and I always need to have small size eye care to keep with me on the plane (the air is so dry). KC sucks, but the good things are that it made me more compassionate with others, more resilient and more willing to rely on and trust others. So I feel that it benefited me. My biggest worry with KC is to pass it to my kids as this is clearly in my family tree (great uncle and cousin also have it, not my brothers though). Overall, I can see, so I'm thankful not to be blind or to have anything worse than poor eyesight and I'm glad KC made me a better person, although I whish I'd be that person without KC.

  10. I hear you! I also want to backpack one day and it seems near impossible with the contacts but the solution might be just to say screw it and go without the contacts. I'm legally blind without them but we can't let KC hold us back!

  11. I also can't see shit without my contacts. It sounds like I'm a lot luckier than you are. My left eye is a lot worse than my right, I get nearly 20/20 with my sclerals athough I do experience halos and light spreading mostly at night.

  12. In my experience its FAR better to acknowledge that disease has cost you something and accept the fact, than suck it in cause others have worse. Yes they have, this does not mean you cant feel disappointed or angry. keep it up my dude, everythings gonna be alright

  13. I'm 31 years old and can't read anything at all past a foot without my lenses. Thinking back, 10 years ago I could at least get by with glasses but I suppose my vision has gotten worse, tho I don't think I've noticed since I've been wearing one form of lenses or another for almost a decade now. I don't think the disease is at all a detriment to living a normal life. At first I had the small rgp lenses, and it was annoying when debris would get in between the lens and my eye or them getting foggy, but I don't think I've had that problem since getting scleral lenses four or five years ago. Just know that at least you're in a better position than I was a decade ago, hopefully better technologies are in the near future, but I'm doing very good right now with what is available. Just keep being proactive with it.

  14. I didn't mean to come off whiney, I'm very grateful for what I do have. I just wanted to hear about some other peoples' experiences, in hopes to learn from it.

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