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My Keratoconus Story, Short but Bitter Sweet


I'll start at the very beginning.. Last year approximately this time last year I noticed a drastic change in my vision in my left eye.. I had always worn glasses but very weak prescription.. No distance needed just for astigmatism! Booked an appointment at my local Specsavers.

She referred me to Local eye hospital.. The appointment didn't come through until July and with no real concerns I continued on.. The increasing headaches being my only real symptom.. Always been quite light sensitive.

After sitting in the eye hospital for 3 hours a rather arrogant young man in (the emergency eye clinic) told me 'there's nothing wrong with your eyes go home'.

After more waiting I got another appointment for specsavers and got the same optician! I explained what the man had told me.. (By now I was just desperate for a new pair of glasses to help me out) she said I can't help you.. I need to refer you to have a scan of your eyes..

This scan took place in a wonderful private practice called Euin Steele's.. Dr Lewis was wonderful and did a scan.. In September!

I'll be honest I wasn't worried.. I wasn't really listening I just wanted new glasses! So he waffled on about Kerry Katona being in my eye and at some point in the future I would need a small tiny painless procedure to help me out! STILL NO GLASSES! He was going to refer me!

An appointment was made for FEBRUARY! So as everything was taking so long it can't be that bad right? Wrong! I saw Prof. Rajesh Aggarwal and he finally explained everything.. Told me I had a cornea thickness of 392 in my left eye and now it was also in my right eye.. Though I haven't noticed it yet in the right.. So within 10 days I was in.. Cross linking! I bypassed any corrective lenses.. (Still no glasses) and any other method straight for Epi-Off corneal crosslinking (CXL)...

So my procedure took place on 3rd of March. The procedure was pain free and actually not as bad as I had imagined.. The few hours after I was okay.. But around the 4 hour mark the pain was really bad.. I was so light sensitive I sat in a very very dark room.. With dark glasses on.. Still unable to open either eye. Although I only had one done! Lucky for me this was short lived.. After a very painful sleepless night.. Although the next 4/5 were very uncomfortable, they were no where near as painful.. I went back and had contact bandage removed 4 days later but unfortunate it hadn't healed as much as the Prof. Would have liked so he stuck another bandage contact in again.. I'm back tomorrow for another check.. It's now not painful.. But feels as though I have slept with my eyes open, during a sand storm.. The drops they provide do help.. Tomorrow I'm back again for an update and a plan for when they will CXL my right eye.. Still No glasses!!!

I'm a working mum (I work as a teaching assistant and assistant speech therapist at a secondary school) I am studying for my BA Honours Degree in English Language and Literature. I am also planning my upcoming August Wedding! Keratoconus won't stop me.. I don't have time.. It's all been so quick and such a late diagnosis I am 29 next week.. I have to be able to see.. I'm still waiting for glasses!

Rachel Attewell

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