Keratoconus: Ghosting, Halos, and Glare, Oh My!

I was diagnosed with Keratoconus in 1994 while in my last year studying to be an American Sign Language Interpreter.  It seemed to pop-up overnight.  I went from wearing soft contact lenses to correct a slight astigmatism, to not being able to see the color of stop lights, people’s faces, or stairs.  At the time of my diagnosis, I was pretty concerned about how Keratoconus would affect my career choice being that I would be working with a visual language (ASL).

Keratoconus; Ghosting, Halos, and Glare, Oh My!

At first, correcting my vision, seemed fairly easy.  Contact lenses didn’t fit right, so glasses were ordered.  I wore those thick-lensed monsters for three years until they no longer could get me the vision I needed to function.  That’s when Keratoconus proved to be a real bear.  I first tried lenses that had weights in them, to ensure that no matter how I put them in, they would right themselves and fit well.  They were soft and hit every bump and peak my eye had.  After weeks of experimenting, I was fit with Rose K Lenses, and I have worn them now (with periodic prescription changes and tweaks to the shape) for 18 years and until recently, have had great success.


This is with my Rose K Lenses. (Keratoconus Group Blog)
This is with my Rose K Lenses.
Ghosting, glare, multiple images, and blurred vision is a daily struggle, but it’s funny how one can adapt.  I find it near impossible to recognize people’s faces from a distance greater than 10 feet.  I have learned to memorize their gait, posture, listen for their voice.  Usually, this works out in my favor, as long as the person is moving or talking.  There are many times that I have waved at someone, only to realize it’s not who I thought it was.  Ghosting makes reading signs a challenge.  I often have to study each letter in a word, comparing one letter to another to decipher individual letters.  Comparing open letters like C, L, and E, to closed letters like D, B, and O.  The number “6” and the number “5” look interchangeable to me in print.  Driving is often a source of anxiety.  Glare is my enemy and it is worse when it is rainy, snowy, or just before sunset when the light is silvery and dim.  A pair of headlights look like two large circles of 8 headlights each.  I limit myself to driving at night only in areas with which I am familiar.  If I am carpooling, I always opt to ride along, and not be the driver.  My driveway to my residence is not well-lit and at night, when arriving home, it is hard to decipher exactly where the edge of the drive is.  I rely on the large rock across the road from the entrance.  I know when it’s safe to turn, when I won’t hit a the curb, by seeing where the rock is in proximity to my car.


I have severe scarring on my corneas. Here is a picture of the scarring taken in 2014.  (Keratoconus Group Blog)
I have severe scarring on my corneas. Here is a picture of the scarring taken in 2014.
I used to be an avid reader.  I’ve gone from reading 100 books in one summer, to having read maybe two in the last two years.  Small print is not accessible and large print is a challenge after a long day of work.  With my career as a sign language interpreter, there are times where I have to sit closer to my consumer (the Deaf person) to see their facial expressions and fingerspelling.  When working with a team interpreter, I often rely on them to help me when I can’t make out a small sign.

I run into door frames.  I often reach for a drawer or an item, and misjudge the distance.  I, on many hysterical occasions, have spotted a handsome fella across the room and nudged my girlfriend, whispering “look, look,”  only for her to respond with, “what about that lady?”  My friends have been great.  They help me judge steps when leaving a party at night, counting out each one so I know how much farther I have to go.  My family has been great, keeping on my progress, my frustrations, my fears.  GPS has been a God-send, being that I can’t read street signs.

I have struggles everyday with my Keratoconus, and being human, I sometimes triumph over those struggles, I’ve adapted to them.  Other times, I allow myself to pout, to cry, to be angry.  I’ve been a Certified Sign Language Interpreter now for 21 years.  Twenty one years with Keratoconus, and I’m pretty sure it’s safe to say, “I got this.”


When you leave the eye doctor after a scleral fitting and have to go to the store with werewolf Eyes
When you leave the eye doctor after a scleral fitting and have to go to the store with werewolf eyes.
I’m currently being fitted with Scleral Lenses, as my Rose K lenses are only giving me 20/60 vision. I’m waiting for the third set to arrive.  The fit is hard to match, but I was able to get to 20/30 with the last pair we tried, so I’m hopeful that we will get it right.

The above story was shared by Nicole Kuhn.

7 comments:

  1. Oh Nicole! Thank you for being so brave. I had NO idea the struggle you were facing. You have every right to pout and cry. You are inspiring and beautiful.
    -Dory

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  2. Yes is me on most days.I dont feel so bad when people wave from 10 feet and i have no clue.Thanks for posting i feel better.

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  3. Yes is me on most days.I dont feel so bad when people wave from 10 feet and i have no clue.Thanks for posting i feel better.

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  4. Sympathy here, I have KC for over 20 years, too. Adapting is the key, and I call the green "leaving the eye dr" thing Alien eyes. My son agrees, since it's only one eye that has a scleral (and I've started bringing saline and removers to the appointment, so I can clean the lens and re-insert it). lol. Good luck with the fit. I have another round or two myself.

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  5. I'm currently being fitted with NovaKone lenses, I believe these are better than scleral lenses. I still don't have my contacts but the doctor has been able to get me to 20/20 and almost 20/15. I have had Kerataconus for years and two years ago I underwent crosslinking with a few other procedures. Since that treatment I have yet to get a good prescription or lenses. So to get fitted with NovaKone has been the BEST things ever. I cannot wait for them. I wish all my fellow Kerataconus patients the best!

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  6. Sclerals are definitely the way to...(GVR, PVR PROSE, and EyePRINT PRO)

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  7. Have you thought about doing the cross-linking?

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