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What I Wish I Knew About Keratoconus

What I Wish I Knew About Keratoconus

I'm Cheryl. I'm a retired medical transcriptionist who should have known more about Keratoconus.

So many things make sense now. I was diagnosed at age 35 by an optometrist, who just happened to have a corneal mapping machine. He described my corneas like "the Andes." In 1998, this was some fancy stuff, I’m pretty sure. Anyway, he says I have keratoconus and that I need contact lenses in order to see. Not just any lenses, but these hybrid things that were a hard lens in the middle and a soft lens skirt. Mine were called SoftPerm. I had to use a “plunger” to put them on and take them off. No one I knew had ever seen anything like these before.

That was the sum total of attention paid to my Keratoconus. I didn’t know the ramifications of that diagnosis. I blithely enjoyed the vision these lenses gave me and life went on.

In 2000, my job sent me to teach in India – so I packed up the hubs and the boys and off to India we went. Bangalore is a busy, growing city with lots of construction. The flat we were given was having an air conditioner installed, but first the workmen had to hand-chisel the marble. Chips of marble and dust and who knows what got into my lens and destroyed it. I never wore them again. When we came back to the US 9 months later, I didn’t get lenses and kept my glasses.

Fast forward to every eye exam over the last 15 years. I would accept “good enough” because there was always doubling. I’d tell the examiner I see a superscript over every letter. Not a peep from the eye guy, any of them over the years. I just figured this is as good as it’s going to get. I settled for that and functioned until I retired at 65. In the last few years and particularly this past year, my vision has deteriorated. I actually thought It was my computer and tried tightening up the text when I realized that it's me that’s blurry. It’s a good thing I touch type, because the keyboard is a red glowing blur. The text on the screen, the same. If I stick my face up to the screen, I am clear at about 3-1/2 inches.

So, somehow the penny dropped and I realized that this was that old Keratoconus. I finally put it all together and I wasn’t wrong.

Now I understand that it’s been there all the time and now it’s bad. I’ve had some eye scares before, but this one is a doozy. I have a collagen disorder, Ehlers-Danlos Syndrome, that causes me to dislocate my joints and detach my vitreous matter. Keratoconus is a visual complication of EDS. One day at work my vision became like lightning flashes and my central vision went away. Off to the retinal specialist, who followed it for 2 years. Retinas good. I worry about it happening, though.

My maternal grandmother was plagued with eye problems. She was blind in one eye, due to spontaneously detached retinas at age 30 and it destroyed one eye. I knew she had limited vision, and had cataract surgery as well as a corneal transplant at the age of 80 years. No one ever said why she had the transplant, but I’d lay money that she had Keratoconus. I see her body bent over the chopping board or the sink, working as closely as she could. I see my own body bend to focus, then close one eye so I get the spoon into the tea. I have no depth perception. I walk very carefully and have fallen a few times. When I’m tired, I have to close one eye or I can’t watch TV or work on the laptop.

Maybe if the original diagnosing opto had said Keratoconus is an incurable disease that can make you need a corneal transplant, it might have rung some bell in my mind. I thought it was gone and that the contacts repaired it. I was so wrong.

Here I am at 68, unable to drive anymore, and requiring crosslinking in both eyes as well as cataract surgery in both eyes. My vision is not going to be good any time soon and I’m pretty shaken up.

I have had both of my adult sons tell their eye practitioners for them and my grandchildren to be aware. My grandchild is young and in eyeglasses already for astigmatism. I worry and pray I haven’t passed it on.

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