Keratoconus: Seeing the World Through My Eyes

Hello everyone,

I have had keratoconus for just about 5 years now. I have been living with keratoconus untreated for the entire time. I am just about to get my sclera contacts. I am just waiting for the eye doctors office to call me back and let me know I can pick them up.

Initially, when I first noticed slight halos around lights, I did not think too much of it. I learned to live with it, and I have been for about five years now. my biggest piece of advice to anyone reading this that thinks they might have it but can live with it. Just get it checked out.

I am at the point now were I am having major troubles driving, especially at night. I am constantly afraid that I am going to hit someone walking on the side of the road because I cannot fully see correctly. I should have just gotten this taken care of when I first noticed something was funky about my vision. The process of having this diagnosed has been an absolute nightmare.

I initially went to the eye doctors back in September to have my vision checked. The first person I saw told me there was nothing they could do. Apparently this doctor didn't even know what keratoconus was because they didn't even mention it to me as a possibility. (I didn't know what it was at the time either so I didn't mention it.) The second doctor did diagnose me with keratoconus, but the only availability they had to fit corrective lenses was two months out. I told the doctor I could not wait that long, so I decided to go to a different eye doctor's office. doing so, I needed to start from square one again, my initial appointment was just the new doctor re-diagnosing me. They needed to schedule a month out for the fitting. I just needed to hold my tongue and wait.

It is absolutely crazy to me that I have a degenerative eye disease that impairs my vision to the point that I can barely drive at night, and I am just now getting corrective lenses after initially going to the doctor's office starting in September. Its almost over.

Anyways, I am excited to get my contact lenses, and have my vision return to what it should be.

Andrew

Update:

My first pair of contacts!


I have received my first pair of contacts. They are definitely going to take some time to get used to. But I am finally seeing the world in full detail again.

Cheers!

18 comments:

  1. Im in exactly the same situation as yourself. The only difference is i need to get some more tests done regarding my corneal thickness so I can be properly fitted a scleral lens. I only have KC in one eye so im lucky, altough im constantly checking my healthy eye for any signs of the disease. Please keep us posted as to what the adapting process is like. Also what brand of lenses are you using?

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    1. I'm not sure the brand but I will check. Any progress on your end?

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  2. Hi Andrew,

    Just curious if you have spoken to your doctor about corneal cross linking? I'm about to have my surgery in March, and have been told by nearly every doctor I speak to that it is urgent to have this procedure done when the disease is in its earliest stages to halt the progression.

    Best of luck with the lenses! Glad you found some relief.

    Brock

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    1. Unfortunately I am only a candidate for that in my left eye but insurance will not cover it. Did you get it done? How are the results?

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  3. My story is different and wish i had other options such as intact lenses. I was recently diagnosed with keratoconus on my right eye when i went to get the topography to see the thickness of my cornea i was given the bad news that my cornea was very thin that there was some scarring already and that my only option would be a corneal transplant. I am only 23 years old i have a full time job and life has gotten difficult as i am trying to survive with only one eye my vision is considered 20/300 vision and thats with my glasses with only a lense on my good eye as they cant prescribe me any kind of lenses on my (right)bad eye

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    1. I'm sorry to hear that. I was just diagnosed with this condition and have not yet been to the specialist. I have seen online where a few people have testimony of being healed in Jesus name. I'm expecting that I will, but in the mean time I will go to the specialist and get some contacts.

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    2. Jesus isn't going to heal your keratoconus. There are no known cases of reversing KC.

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    3. Below is testimony and documentation of healing of blindness in Jesus name.

      https://www.youtube.com/watch?v=DiOHBjkth-c

      https://www.youtube.com/watch?v=xQsmiROYI8A

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  4. Your doubt is noted. What you don't realize is there have been people cured of keratoconus via prayer in Jesus name on the spot. I have seen many people cured on the spot of many problems with my own eyes. When I'm healed I'll make it a point to provide proof to you.

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  5. I have KC, both eyes. Glasses don't work and I have tried Scleral lenses, RGP's and Kerasoft, all of which my eyes are intollerant too. Sucks to be me. I just read that some sort of stem cell treatment is in testing. Fingers crossed we could be on the verge of a cure instead of having to wear contacts and things.

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    1. Yeah the lenses are very uncomfortable and painful

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    2. Yeah the lenses are very uncomfortable and painful

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  6. Just curious how the halos you see looks like because I suspect I may be seeing halos too or perhaps I am just being over-sensitive.

    I see something like this for as long as I can remember... At least 10 years I guess... https://www.google.com.sg/url?sa=i&rct=j&q=&esrc=s&source=images&cd=&cad=rja&uact=8&ved=&url=http%3A%2F%2Fwww.nkcf.org%2F&bvm=bv.121421273,d.c2E&psig=AFQjCNEU2HD2Kq8Tk94sT8yEYfivSlESjw&ust=1462895580197290

    Are the halos you see worse than this? I visited an eye specialist today but he couldn't confirm. He sayd there are no signs for now and that my astig has stable at 0.5 and 1.0 for the past 1 year... Although I had late onset of astig at around 19.

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  7. Just curious how the halos you see looks like because I suspect I may be seeing halos too or perhaps I am just being over-sensitive.

    I see something like this for as long as I can remember... At least 10 years I guess... https://www.google.com.sg/url?sa=i&rct=j&q=&esrc=s&source=images&cd=&cad=rja&uact=8&ved=&url=http%3A%2F%2Fwww.nkcf.org%2F&bvm=bv.121421273,d.c2E&psig=AFQjCNEU2HD2Kq8Tk94sT8yEYfivSlESjw&ust=1462895580197290

    Are the halos you see worse than this? I visited an eye specialist today but he couldn't confirm. He sayd there are no signs for now and that my astig has stable at 0.5 and 1.0 for the past 1 year... Although I had late onset of astig at around 19.

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  8. Part of my story is in the FB page Keratoconusin the Caribbean.

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    1. Hi Roseanne, I couldn't find that Facebook page, please post its link. also, we would be glad to share your keratoconus story too, you can send your article and photos to [email protected]

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  9. Part of my story is in the FB page Keratoconusin the Caribbean.

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  10. It took me almost 13 months and 3 different doctors to finally receive a correct diagnosis of KC. I am in my mid 50s, and apparently since this is "usually" a disease of young people, the first 2 doctors never considered the diagnosis...they couldn't give me any diagnosis, just random and vague suggestions that they had no confidence would work :(

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