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You Don't Know What You've Got, Until It's Gone.

It really is true, when they say, you do not know what you've got, until it's gone. You really couldn't hit the nail on the head any harder if you tried, when it comes to vision. Which is a funny euphemism to use really, how many of us could actually hit a nail on the head physically! As a teenager, I used to trip over, fall up kerbs or stairs, and pretty much trip over nothing really. I wore glasses and the prescription was changing every 6-12 months but neither I nor anyone else thought much about it.

You don't know what you've got, until it's gone, by Kerrie Phillips (Keratoconus Group Blog)

It wasn't not until I graduated from university after my nursing diploma, and went to do my driving test, it all became apparent. I failed my mock test, as I could not read the number plate at the required distance. After another eye exam at a different opticians to my usual, I was diagnosed keratoconus and referred to the local hospital.

I was seen by a corneal specialist and had a topography scan confirming diagnosis, from there I was referred to a contact lens specialist for fitting. Lens seemed more harmful and trouble then they did of benefit, and as vision with glasses was good that was how I carried on. I have managed to work full time, bring up a family and squeeze in a critical care BSC, over the last eight years.

Roll onto now eight years later, my condition is advancing and vision deteriorating, I have come to a point, where I am borderline for driving with glasses. I struggle with distance,everything has furred edges and seems distant. Sometimes people call me across the street, but I am unable to recognize them, due to facial distortion. If I go out at night I need guidance and help, someone to hold my hand and lead me! Due to altered depth perception.

If I go out in the day my eyes are streaming with tears, and I'm almost blinded by them, I need to keep my head down and look at the path. I go to bed with sore, dry eyes, that feel like all the moisture has been sucked out of them and replaced with sand, I wake up like it to.

In eight years myself and my lens specialist, have not been able to come to a solution with lenses. Dry eye and atopia mean my eyes have rejected everything so far, after five hours of wear lenses are seriously painful and my eyes look as though I've been stabbed in the eyes. I'm not advanced enough to be considered for any procedures, last resort is to try a scleral lens, but there's no guarantees.

Kerrie Phillips (Keratoconus Group Blog)
I'm scared for my future, I'm 39 I have a long life ahead of me, and I hope a long and fruitful career as a nurse, that I want to progress and develop in. I wake every day not knowing how my vision will be, wondering when the day will come when I can not drive anymore,when I can not work anymore and do what I love in caring for others.

I have lost confidence, I avoid going out, I avoid driving, and limit myself to my journeys to work and back. This in turn means I avoid friendships, because I want to avoid driving places and meeting people. I can honestly say my KC has defined me and who I am, but also made me a better nurse, I only live in hope these sclerals work for me when they come, if not I'm not sure what the next chapter will be for me.

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