My quest to see- a keratoconus sufferer’s story
I don’t remember ever having an issue with my vision as a child but Mum says I was ALWAYS rubbing my knuckles into my eyes, sometimes for over an hour at a time. I had a vision test at about 10 or so just to check for any issues as Mum has astigmatism and associated myopia and my father suffered from hyperopia (long sightedness). The optometrist said she could not see any problems except that I was lazy and didn’t focus properly, she gave me eye exercises (such as focusing on things far away and then things close up) and told me my vision was fine.
I managed to get through high school and a TAFE course without any vision aids. It wasn’t until I was about 19 and one day I was with a boyfriend and he was reading a sign across the road and I turned and asked him how he could make words out of the black blurs, I thought they just looked like smudges. He read a few more signs that were even further away and I decided I needed an eye test. I chose an optometrist at random and told them I thought I was short sighted like my mother, they did the tests and suggested I MAY have keratoconus but really didn’t give me any information, just a prescription for glasses which seemed to make things easier to see. Over the years I went through 1 or 2 more scripts.
I lost my most recent glasses script and couldn’t remember who wrote it so I had been trying to manage my condition with a set of glasses from an old prescription. I decided to go get another eye test (by this stage it had been a few years) and it was suggested again that I MAY have keratoconus, a little bit was explained about corneal thinning and I was sent to an ophthalmologist for his opinion. The ophthalmologist confirmed keratoconus, told me a bit about the disease (including the fact that it is progressive, I could end up classified as legally blind as a result, and that corneal grafting can sometimes be the only management). We discussed a procedure called corneal cross linking but I couldn’t really justify the expense (he said it was over $1000 per eye) and I didn’t like the fact that it stops progression but doesn’t guarantee an improvement so I just didn’t do anything. I left the ophthalmologist pretty upset because at 22 or 23 I wasn’t ready to deal with the fact that my vision was going to get worse.
I continued my life, squinting through my glasses and barely able to see edges of anything, then after about 12-18 months I went to another optometrist and told them I had keratoconus, they told me that there was only one optometrist’s that dealt with that in my region and told me to see one of the 2 optometrists that worked there. I made an appointment with Heidi Hunter who is now my optometrist for life. She explained keratoconus in full detail, answered all my questions, took a LOT of photos and set to work trying to find the best management and best way to restore my vision. I had more eye tests than I’d ever had, tried NUMEROUS types and sizes of contacts to get the right fit and feel and started regaining confidence that I might be able to see the world around me. I couldn’t afford my lenses and fitting appointments on my own so I took out a small bank loan so that I would have all the money up front.
It’s been 6-12 months since I first met my optometrist; I now have what is considered “perfect vision” in my right eye using a piggyback treatment of a soft lens underneath an RGP lens. I chose not to pursue my left eye as after a lot of trying I wasn’t able to find one that I found comfortable and even after several eye tests it seems as if my left eye is almost blind. At the moment, without a contact I can’t actually see anything on the eye chart with my left eye, it is just a light with some grey smudges. I can’t justify the price of an RGP (mine are $517 each) that doesn’t feel comfortable and may not restore enough vision to be worthwhile. My optometrist says she hasn’t given up and if I want to change my mind she is happy to work on my left eye, but I am so happy with my right eye I barely even notice that I can’t see with my left, the only annoying thing is I have a bit of ghosting or double vision as a result of my left eye trying to work but if I cover my left eye it instantly vanishes. I can’t express how grateful I am to Heidi for not giving up on my vision when I was at a stage where I was ready to accept that poor vision was just part of who I was (I actually told her after one day of discomfort with my RGPs that I thought I was ready for surgery). My keratoconus no longer gets to choose how I see the world.