Keratoconus my story by Janna from Australia

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My journey with Keratoconus

by Janna Seysener, Australia

I never had a huge problem with vision as a child but Mum says I was CONSTANTLY rubbing my eyes with my knuckles. I had a vision test at about 10 or so just to check for any issues because Mum has astigmatism and associated myopia and my father suffered from hyperopia (long sightedness). The optometrist said I had nothing wrong with me I was just 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 even a childcare course without any vision aids. 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 were far too blurry to distinguish. He read a few more signs that were even further away and I decided then and there I needed an eye test. I would have been about 19 at this stage. 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 more information, just a prescription for glasses which seemed to do the trick.

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Over the years I went through 1 or 2 more scripts. I lost my most recent glasses script and couldn’t remember what optometrist 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, and a little bit was explained about corneal thinning and I was sent to an ophthalmologist.

Yes- it was Keratoconus

The ophthalmologist confirmed keratoconus, told me a bit about the disease (including the fact that it is progressive, I could end up blind, 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 and I didn’t like the fact that it doesn’t guarantee an improvement so I just didn’t do anything. (note CXl is now available on the NHS)

About a year later (after still going through EVERY day squinting to see through glasses that weren’t strong enough to allow me to see most things) I went to another optometrist and told them I had keratoconus, they told me that there was only one optometrist shop 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 the woman who is now my optometrist for life.

She explained keratoconus in full detail 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 SEVERAL contacts to get the right fit and feel and started regaining confidence that I might be able to see the world around me.

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My eye with my scleral RGP

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 style treatment of a soft lens underneath a scleral RGP lens. I chose not to pursue my left eye as after a lot of trial and error I can’t achieve comfort and even after several eye tests it seems as if my left eye is almost blind. I can’t justify the price of an RGP that will never feel comfortable and may not even restore enough vision to be worthwhile.

I’m in Australia so my lens cost close to $700 (with all my fitting appointments included) and I can’t justify it, our Medicare system (unlike the NHS in the UK) doesn’t cover it. 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. I can’t express how grateful I am to my optometrist 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.

Now I am in control of my keratoconus instead of the other way around.

Here is my poem about having keratoconus

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I spent year seeing tracers
Had double vision and blurred sight
Didn’t know I had the choice,
To put an end to my plight

I tried many optometrists
I had eye tests galore
Was once told I was lazy,
To just “focus more”

I was diagnosed as short sighted
Given a spectacle prescription
Later I was told of a condition
The symptoms matched my description

Knowing this thing had a name
Didn’t come as a bonus
It couldn’t change the fact
I have keratoconus

I researched the diagnosis,
To learn the how’s and the why’s
Of why I’d been cursed
With these two faulty eyes

Usually starting in the teen years,
Most agree it’s progressive
It can take years to worsen
Or can be quite aggressive

The key feature’s the cornea
Generally rounded for most
It’s more conical for patients
Where this disease takes up host

I was sent to Marketown Optical
To meet yet another optom
At first I was quite sceptical
Of meeting Heidi or Dom

I booked a meeting with Heidi
And soon all my fears died
She specialised in my problem
There was someone on my side

I said I hate RGP lenses
“They’re just not for me”
She said it would be worth it
When I could finally see

I pushed past the discomfort
And now I know she was right
I can’t thank Heidi enough
For restoring my sight

Now my Keratoconus
No longer dictates what I see
It’s only part of my life
This disease won’t define me

Copyright Janna Seysener, December 2013. Published with kind permission of the author.

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