What is it like to have keratoconus? originally appeared on Quora: the place to gain and share knowledge, empowering people to learn from others and better understand the world.

Answer by Miranda Marcus, Diagnosed with Keratoconus in 1999, on Quora:

On my sixteenth birthday I asked my Mom if I could drive home to earn some night driving hours on my permit. It was raining lightly as I pulled up to a green light where I needed to make a left turn. I was having a hard time judging how far away the oncoming cars were and I asked my mom, who was in the passenger seat, is it OK to turn?

She said it was, but I was still feeling unsure and rather slowly committed to the turn. I remember there were so many oncoming lights and I couldn’t tell where the oncoming traffic was. My mom started yelling at me to speed up and my step-father int he back seat started yelling at me to stop. Caught in indecision I did neither.

The wreck nearly totaled my mom’s car. My mom and step-dad were fine, but I had a laceration on my lip that required stitches, and still shows up as a faint scar. The driver of the other car had diabetes and went into anaphylactic shock. Two years later, he sued us for medical damages until our insurance company agreed to pay out the $100k limit.

A few months after the accident we learned I had keratoconus. One of the primary symptoms of keratoconus is the presentation of a large aura around bright lights, and it’s worse in the rain. I didn’t know enough about driving at night to know that what I was seeing wasn’t normal. The change in vision was so slow I never realized I had a problem.

Image: My night vision with keratoconus (varies between the two bottom images, even with contacts in).

My mom and I went to our local Walmart optometrist to get my glasses prescription upgraded and he suggested we go find a specialist because he suspected I had keratoconus. Later on, my specialist was greatly surprised that the Walmart doctor had correctly diagnosed this rare corneal disease.

We were lucky to live within an hour drive of an Ohio State University doctor who was a keratoconus researcher, so I was soon able to get appropriately fitted for hard contacts. The hard contacts are used to create a spherical lens over the conical cornea so that incoming light refracts properly.

Things went along generally well for several years until I moved to another state. This began a several year period where I had poorly fitted contacts. The level of light sensitivity was so bad that I was not able to look towards the ceiling in my office as the fluorescent lighting was painful. I purposely chose my home so that I would be driving west towards work in the morning and east towards home at night, never driving into a sunset or sun rise. Eventually, I stopped going out at all unless very necessary.

Eventually I gave up on non-specialists and found another corneal specialist at the University of Chicago. On my first visit I asked him if he could just do a corneal transplant as I couldn’t take the pain any more. For reference, corneal transplants have a 90% chance you’ll come out with the same or better vision, and it takes a year for vision to normalize. So, you have to wait a year to find out if you were the unlucky one in ten to actually end up with worse vision! Not a thing to do lightly.

The Chicago doctor instead got me to do a process called “piggy-backing” which is where one wears soft contacts under the hard contacts to basically protect one’s eyes from the trauma of the hard contacts. This was a huge relief. Most of my light sensitivity went away.

For the next several years I wore two pairs of contacts every day. I remember once my Chicago doctor asked me if I wasn’t tired of it yet, since most of their patients apparently wanted to be done with the multiple contact process as soon as possible. No, I wasn’t tired of it, it was incredibly better than the misery I’d endured before. I had no desire to stop.

Eventually I moved back near Ohio State University and my original doctor. He was nearing retirement and set me up with one of his protoges who got me started on scleral lens style contacts, which were again a big improvement. However, three years after that it became clear that the protoge could not deal with my insurance company to get coverage and she wanted me to commit to spending over $1k a year on contacts. After a lot of back and forth, my mom found out by coincidence that her eye doctor could fit scleral lenses, and his office could work with my insurance company, so I changed doctors again.

For the last twenty or so years I’ve avoided driving at night, especially in unfamiliar areas, especially on roads that are not well lit, and most especially in the rain. Since my corrected vision is still not 20/20 - making street signs a challenge to read at normal driving speeds, GPS units have been a godsend. Every time I go to renew my license I fear that this will be the year that I do not have at least one eye that sees 20/40, which is the requirement to drive.

One year that fear came horrifyingly true when I had to admit to the examiner that I could not read any of the letters in the test. The examiner said, “sometimes that happens, let’s try this machine over here.” And I was greatly relieved to be able to read things in that one, thank goodness.

In daily life, I wear my contacts from the time I get up to the time I go to sleep. This means that I can never fall asleep on the couch watching TV, since I can’t see the TV without contacts, and I can’t sleep with my contacts in. I can never get up in the night and check on any odd noises, since I can’t see until I go through the contact insertion process, which is somewhat lengthy.

One time, I’d taken out my contacts preparing for bed when I heard a great deal of barking and whining from outside and my husband yelling. I ran to the yard door, but I had no idea what was going on. I couldn’t see my husband or our dogs, it was just one blurry dark night. Later, I learned that a skunk had bit one of our dogs on the muzzle and our other dog had grabbed the skunks tail and was dragging both the skunk and the other dog around the yard. My husband had to beat the skunk off with a flashlight. He carried our dog that had been bit into our house as she wasn’t moving - which it turns out was due to shock not injury, thankfully. Knowing how much there is to miss when you can’t see really makes one appreciate it when you can see.

I could tell many other stories of inconvenience, but mostly I’ve been blessed to have a manageable case of keratoconus and have access to good medical care.

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