Wednesday, May 1, 2013

Living With Keratoconus

Hi guys! This post is going to be a little more personal by way of explaining why there isn't a less personal post up here instead. Kinda cyclic sounding, right?

I have Kerataconus, a degenerative disorder that affects the cornea of your eyes. In my case, the cornea thins out and weakens over time (I was diagnosed with this ~4 years ago and thankfully, it's still mild) and begins to distort from the gravity pulling it down, creating a conical protrusion somewhere along the eye. So basically, the cornea is weak and has distorted, and instead of smoothly following the shape of my eyeball, it's got ripples or even some pooling. I've never seen it but the eye doctors certainly have.

What this means is that regular eyeglasses do not fix my eyesight. Though they may try to correct by giving me the right power, the distortions caused by the uneven cornea means I've got some doublevision type stuff going on even with the glasses. They just don't fix it.

I currently have a power of -11 in each eye, which means that my quality of life without any corrective eyewear would be pretty limited. Can't see more than a few inches ahead without anything on.

For the past few years, I have worn rigid gas permeable contact lenses in both eyes. They are smaller contacts that just fit over your pupil, not your entire iris. They are also hard (hence the word rigid in the name) and do not bend the way soft lenses do. They are supremely less comforable than the soft contact lenses that you can just put on and forget. You can't forget RGP lenses - you feel those everytime you blink.

There's a new treatment that I may or may not qualify for that will help strengthen my cornea over the course of two years (They can only treat one eye at a time, and it's a series of 8 treatments over 12 months for one eye). This cross-linking technique drops Vitamin B2 into my eyes and then activates it with UV light. Somehow, this is supposed to strengthen collagen bonds and help my cornea from getting worse, thereby slowing, if not halting, the progression of the disease. It doesn't fix it, but it lessens the likelihood that I will need cornea transplants for the future. Those are a last-option treatment for patients with Kerataconus!


To qualify for the trial, I have to meet a certain amount of criteria just to make sure that this won't adversely affect me. I need to stay out of my RGP lenses for about a month to "stabilize" my cornea so they can test how thick or thin it is before agreeing to let me participate in the cross-linking procedure.

As of today onwards, I cannot wear RGP lenses untl my evaluation. I am wearing glasses but as I wrote above, they don't correct my vision properly. In fact, the reason I am able to type this at all is because I memorized the keyboard long ago and do not need to look at the letters and where they are. If I squint at the keyboard/screen, I can make out what I am writing, but it's definitely a tremendous strain.

Give me a few days to get used to this decreased quality of vision and constant blurriness and I'll try to get back into blogging.

ARGH. This is frustrating. 


  1. Wow, what a struggle! I literally cannot imagine. Suddenly I can see why my computer teacher taped those file folders over the keyboard for typing tests. I know even when she did I wanted to cheat and look at my hands. I hope you get some good answers from this for better eye sight.

    1. Hi Rebecca, thanks for the kind words! Even the simplest things can get a smile on your face and make the day seem not so bad! You're right - I HATED the keyboarding classes we had to take in elementary school but am so thankful for it now - touch typing is such an essential skill!

  2. Wow, I hope this trial helps you. I know a little bit about losing eye sight, due to my disorder over the years I would get corneal abrasions which caused scarring on my right cornea so my vision is blurred slightly in my right eye. It's possible at some point it could get worse or happen in my left eye also and there's no solution for it.

    I cannot for the life of me type like we were taught in keyboarding class without looking at the keyboard but I do ok, haha. My new laptop now has a dictation possibility now too, still learning it but might come in handy. :-)

    Wishing you the best of luck!

    1. Eeep, that doesn't sound fun at all :( Oh my gosh if there was any additional scarring on my cornea in addition to the bad eyesight, idk what I'd do. Can't wear hard contacts if you've got corneal scarring! Best of luck with it and I'm hoping they find out more about it soon >< You know when I was diagnosed 4 years ago, they knew NOTHING about Kerataconus compared to now. In fact, the only treatment option was transplant, and now there are 3-4 other things you can do before that step!

      So yay progress! Fingers crossed that your left eye stays well though :)

      The Keyboarding lessons definitely paid off for me + all the years of MSN Messenger overuse helped, I guess.