Thursday, 27 June 2013

My Life with Keratoconus

I was diagnosed with this disease three years ago, even though my symptoms began when I was 17. I had a "ghosting" effect in my right eye, which my Optician told me was due to my astigmatism.

I thought nothing of it, got used to it to the point that I would only really notice the ghosting if I was looking for it, and carried on with my life. Fast forward to the age of around 24, when I began to have difficulties getting my soft contacts to correct my vision. I had always had near-perfect vision with my contacts. My Optician tried to help, changing my prescription almost every month, and trying different brands and different types of soft lenses, including torric lenses (which are soft, but a little larger than regular soft lenses).

Once more, I got used to just not being able to see perfectly, and it wasn't too bad. I carried on with my life.

When I was 27, I went for an eye appointment and my regular Optician, Mr Melville, who I had been seeing since I was 7 and first got glasses and was old even back then, was out sick. Mr Edward Haslett was filling-in. He was very nice, gentle, and attentive. 

I told Edward all about my vision woes. I was in that day because I couldn't even see to watch TV with my current lenses. suddenly My eyes were so sensitive to light that I couldn't step outside without wearing my sunglasses. I was having trouble seeing at night because for some reason headlights were streaking so badly and if I was tired, every light had a huge halo around it.

Edward sat with me for nearly two hours trying to get an Rx that would work. And then he said to me: "I don't want to worry you, but I think it's possible that you may have Keratoconus."

Kerra-ta-wha?? He gave me a pamphlet and told me to look it up, and to come see him in 6 months when he would check my lenses again. He told me that he could not definitively diagnose me until we went through a few months of trying certain lenses out and running some diagnostic tests.

Being the research maniac that I am, I found out that Keratoconus is a disorder of the eye in which the cornea become unstable, thinning-out in the center, and losing its shape. The cornea becomes cone-shaped (Kerato (greek) - horn or cornea, and konos - cone). It can happen in one eye alone but is much more commonly found in both of a patient's eyes. It causes a deterioration in vision, light-sensitivity, streaking, multiple vision and ghosting, halos...all the symptoms I had. I learned that regular soft contacts and glasses could not correct vision in Keratoconic eyes. I also learned that Keratoconus is compounded by my other vision issues: regular astigmatism and myopia (short-sightedness), because in addition to correcting the way light is coming into the eyes through the cone-shaped cornea, we would also have to correct my myopia.

Then I got pregnant, and financial constraints wouldn't allow me to get the test that Edward recommended: a Corneal Topography, which is a 3D image taken of the cornea to determine its shape. We just stuck with a type of Torric lens that helped more than all the others had for the time being. 

After my daughter was born, I finally had the Topography done, after a bunch of tests with different lights and dyes. Edward took one look at the Topography images and said "exactly as I suspected, you have Keratoconus in both eyes." I was 28. 

Even though I had figured that I must have it, after reading the literature and doing the symptoms checklist, hearing the words still made my heart fall through my stomach, because I knew the end point of Keratoconus can be very severe, leading in some cases to corneal transplants, cornea rupturing, and, in rare cases, blindness. It's degenerative, and there is no cure. 

But Edward was so nice to me, so patient, he calmed me down and said "let's deal with this. It's manageable. Your case isn't too severe." That's not to say that it might not progress rapidly, but for now, we manage it.

We started  a few months later with fitting me for Rigid Gas Permeable lenses. We went through a few different types until we settled on one that had a slightly large diameter than normal, since I could always see the rim of the smaller ones in my field of vision. For a year I battled with my RGPS. They corrected my sight, but they collected lots of dust and corneal and skin cels, which irritated my eyes and made the contacts blurry. 

I live in Barbados, where corrective options are very limited, and treatments like surgeries are non-existent. Edward wanted me to try hybrid lenses, but to do that I'd have to travel to Miami, be re-daignosed, and then fitted. The lenses themselves are quite expensive, and I simply could not afford the trip and the cost. As it was, the RGPS I was using I had already paid $900 for, in addition to all the tests and appointments. 

And so Edward suggested "piggy-backing", where I would wear a soft "bandage lens" underneath the RGPs. It's not  permanent solution, but it would help for now. I have such bad ghosting (my worse symptom) that glasses are a waste of time other than getting me around my house. I don't wear them for any other reason than to give my eyes a break from my lenses.

That was 2 years ago. So far I've managed pretty well. But now I've got another curve-ball to face.

I just had a check-up, and while the correction of my lenses is still almost perfect 20/20 vision, the fit of the lenses isn't great. They are pressing slightly on the high point of each cornea, which is why I sometimes get eye pain if I'm really tired or my eyes are dry, or if I have to wear my lenses for prolonged periods several days in a row.

Edward wants me to go overseas to be fitted for hybrids as soon as possible. The current economic times just won't allow it. I do have to get another Topography done, which we can do here, to determine if there's progression in my Keratoconus, and if there is, how much. For now I'll probably have to get re-fitted for a new set of RGPs that have a deeper well so that they're not touching my corneas and putting pressure on them. Pressure on the cornea is one of the biggest no-no's with KC. No rubbing of the eyes at all (which is a huge Catch-22 because you eyes are more sensitive to light and dust etc, which makes them itchy). 

My case isn't that bad yet. I pray it won't get too much worse. In Barbados there are no options other than RGPs. we don't do cornea transplants for KC here, hybrid and scleral lenses aren't available here, and we certainly don't have cross-linking or Intacs done here.

There are amazing support groups online on all the social media sites. It is very scary. I felt like my eyes were these huge ticking time bombs that were going to explode suddenly in me head and leave me blind. I still feel that way sometimes.

But I didn't let it stop me. I figure if the worst case scenario is going blind, then I should enjoy my sight while I have it. My case is moderate at the moment, but I can't rely on that because there's no way to predict how it will progress. 

I've done lots of experimenting to find ways to wear makeup and still care for my eyes. I've figured out how to remove my makeup without disturbing my corneas. I made a video on KC and also on applying makeup with KC. I'm going to film how I insert my contacts and how I remove them, and also how I clean my makeup off.

We keep going. Carry on with life. It's a serious problem, but it doesn't define you. Those of us who are managing our KC can be a beacon of support for those who have just been diagnosed and those with bad cases. And we can raise awareness about KC to have more research done and more and more treatment options available. 

If anyone reading this has KC or knows someone who has it, please share your stories with me! Check out my videos on KC on my youtube channel and share them with your friends and family:

For more information visit:

Search hashtag #kcfamily and #keratoconus on Twitter and Instagram.
Search for Keratoconus on Facebook - there are tons of groups and support systems.

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Let's support each other on this journey!