UK Keratoconus Self-Help and Support Association

Hi, I am 30 (well 29 until May 10) and have just been told I have KC. The optician was very surprised to hear that I was never referred to a hosptial in the past. Does that mean I have always had KC?

Been reading loads on net over the weekend, and a light worried to be honest. Only have it in one eye. My other eye has near perfect vision. Awaiting appointment with Hospital to agree next steps.

Should I have been diagonsed sooner and or can KC develop late?

Only ever had glassess so will be hard to adjust to contact lenses.

Hi Vrinder and welcome to the forum,
KC is most often diagnosed in the teens or early 20s, but it can develop later than that. There's even something called 'late onset KC' which can be diagnosed in the 40s or 50s.
What also often happens is that people have one very good eye, as you do, and that tends to take over and mask the fact that the vision in the other eye is deteriorating. So it's not until you cover the good eye that you realise all is not as it should be with the other. So if it's a while since you've been to have your eyes tested, the KC could have been gradually developing in the affected eye.
But there's no harm done even if the KC has been there for a year or two. You might have been prescribed contact lenses earlier, but it sounds as though you have been managing OK using the good eye. If you are prescribed a contact lens, then it will hopefully improve the vision quite a bit, which is quite a good motivator for wearing a lens! And the hospital will be able to monitor whether the cornea is changing over time - as you've probably read on the web, KC varies a lot in how it progresses and can stabilise over time.
Good luck
Anne

Vrinder

Welcome to the forum.

One good thing about 'late onset' keratoconus is that, as the cornea tends to stiffen as we get older, it is uncommon for people whose condition presents late ever to need any intervention other than contact lenses.

All the best

Andrew

Thanks guys - that is very reassuring. I fully agree that my good eye has masked my left eye and in fact now that I have been diagnosed with it and cover my good eye it is so obvious that my eye sight is so much weaker. I have also been diagnosed with bad astigmatism so that was always the excuse I would give when I had bad days with my eye sight (very few and far between though) what triggered me to book eye test was that I began to get strong pains above the eye with KC and no pain killer would help. I guess I will have a challenge wearing contacts as always wore glasses, and I have a habit of rubbing my eyes a lot of I guess I have to discipline myself. My wife wears contacts too but for bad vision so I guess I will have her support. Thanks will share and feedback as and when I have more info or if I have some questions but this forum is very good.

Dont stress too much about getting on with contact lenses necessarily. I have tried CL in the past on numerous occasions and for one reason or another have yet to find a set i am comfortable with. However as i generally get very good vision in glasses in one eye (KC mainly in left eye, only very mild in the right) i just have a balance lens for glasses for the left eye. It did take some getting use to going from a prescription in the left lens to a balance lens (few bruises etc) i am still able to drive a car/motorbike with just the one eye.

I also found it more problematic going from vision in CL for both eyes to vision for one eye only in glasses quite difficult, once i took lenses out at night etc.

I would love to find CL i can get on with for more than a couple of hours a day, however this isnt possible at the moment so for me i prefer managing in glasses. What would happen if my right eye was to deteriorate further i dont know, i guess a lot more time spent in the CL sessions and hospital clinics. I guess i get lazy at times because i can manage in glasses so dont always push.

Yes I guess you are right. I am also to blame for being very lazy with glasses alone let me trying CL. I guess I wont know until I try. I guess when I read that I may not be able to drive etc it scared me. At the moment my left eye is strong (touch wood) which is letting me lead a normal life but if it does indeed spread to that eye then I dont know what I will do also. But guess will have to cross that bridge when/if I come to it.

Can I ask something. I work for a bank (please hold back from hurling any abuse at me lol) and am offerred Bupa cover which includes optomethary treatment (spelt wrong i know) on it. Would people recommend going private or NHS for treatment (CL or surgery)?

I know it might be stating the obvious but I really don't have time running to and fro from hospital appointment to the next etc and am assuming private might be more direct and quicker.

Hi i have KC worse in one eye than the other. When i was diagnosed i was told i had probably had it for quite a while but as the vision in my left eye was close to perfect i didnt notice. Hope everything goes well xx