UK Keratoconus Self-Help and Support Association

I was diagnosed with KC 35 years ago, have had two corneal grafts and a cataract op in my left eye, but with my right eye remaining untouched. The diagnosis was made based on the change in my vision but at no time did anyone question me about or refer to the light sensitivity, which in fact I've only come to associate with KC through recently joining the forum!

Although my first graft lasted for 20 years, when I went for check-up's at my local NHS hospital for the last five years and complained about light sensitivity and soreness, I was told it was just normal having had a graft ... it took a private referral for an immediate reaction of "The graft's done brilliantly but it's now worn out and you simply need a re-graft".

I know my second graft is still healthy and not causing a problem, but having read about the "pain" which people suffer to varying degrees due to KC, I would appreciate their definition of this pain. Stabbing pains? I don't get those. However, I do often have a feeling almost of sandpaper rubbing on my eyes (quickly reach for my lubricating drops, get off the laptop and try to rest my eyes for a bit). This can happen in both eyes at the same time or independently. Is this the "pain" of KC?

Look forward to hearing your opinions and thanks.

Chris

I really don't get any pain in my eyes. To me, it's that the eye is more sensitive to certain things which can be uncomfortable.

Thanks for your response Steve. Having heard any number of people refer to pain, it left me wondering if I was somewhat different. You've also mentioned something I've not heard from others - that your eyes appear more sensitive which can be uncomfortable. That's certainly something I've found - a bit of dust or eyelash in the eye results in extreme discomfort for at least the rest of the day and sometimes longer ... but, as mentioned, not what I'd describe as "pain" even though the eye might be kept tightly closed and watering because of the discomfort.

the "pain" if you like which I experience I refer to on different levels and scales

on one end it is as if I have stubbed my toe on something as it is that kinda dull sharp sudden pain that comes over in a wave

on the other hand its like when you get vinegar or salt in a cut it stings like a **** and no matter what u do it cant be numbed you just have to ride it out

other times it is like when you have a rash, you know if you scratch it it will make it worse but in the momentary itch you get relief only for the pain to intensify n multiply the mometn you stop

other times its like individiual hairs ahve been plucked with tweezers and are piercing my scalp

just a few examples of KC pain I have experienced ther are more but it is narly 3am

Lea x