UK Keratoconus Self-Help and Support Association

Hey guys I've read this forum a lot but finally decided to make an account, I am from Canada so some of the stuff I say might be a little different but:)

My issues started in agusut with severe eye irritation I didn't know what caused it as I had no allergies but it was pretty bad but I ignored it.

Then I noticed I woke up one day and I had slight blurred vision my right eye being worse then my lift, it wasn't horrible but I called a local eye doc and made an appointment.

He looked at my eye and as many KC cases said simple astigmatsim and gave me a prescription that fixed my vision and I felt good. Over the next few weeks I noticed as what I now understand as ghosting when looking at the tv I knew something wasn't correct so I rushed the otpemtirst, after an hour an a half of exmanininf he decided not to charge me noticed a shift in astigmasstm but nothing serious changed my left lens said even with the ghosting I was seeing 20 20'withnlenses.

I left feeling horrible I just knew in my gut something else was going on so I went to my doctor a little bit later and lied to him saying the optemitrisrt saw something I need to see an opthmamologist.After a few months of waiting I saw him he did all the exams and by the time vision had degraded a little but the glasses still helped, he said it looks like early kertaconus as he can see a peak in the centre cornea and that eventually it would turn to a cone shaped I already knew this due to doctor gooogle lol he then refered me to a corneal specialist.

About a month and half goes by this feb of 2017 I see the corneal specialist they did corneal topography and a second diff type of scan and a bunch of tests then I saw the specialist herself, she sat me down showed me the scan and said this is early kertaconus in both eyes though not cone shaped yet it would get there and since I was 21'at the time she saw lots of time for progression I knew all treatment options avalibale after extensive private research.

She said plainly that the best thing to do is an attempt to halt the disease with epi off cross linking she said I was much to early for intacs , after everything I have read I knew corsalinking was my only hope for halting this sucker the best way I could so I signed the forum and my appointment was march 20th, I already assumed it was KC long before so the diagnosis didn't upset me I was more happy to finally get an answer.

The cross linking wasn't to bad I just didn't expect the pain I got the first day

I saw the specialist this Friday as it's been a bit over two weeks, she took the bandages out and said everything seems pretty much healed next time she willl be doing a scan after three months she will give me the okay to get contacts and then scans every few months for awhile to see how things are.

I suffer from severe anxiety and depression long before this and I'm embarrassed to say I broke down yesterday just crying everything just came at me once, I'm going to a centre here that fits for these issues that have everything from KC soft lenses to rgp hybrids mini sclerals to full ones and they even use eye print pro for hard to fit or other issues that normal fits aren't belong with.

Anyways my vision seems okay though I do deal with some decent ghosting I am just wondering if I am having false hopes that a good pair of lenses will not even get rid of it but at the least reduce this effect somewhat?

I feel pathetic but I feel hopeless alone and broken and am coinvinced no contact lens will help,though I've never been fitted before in my life and I'm constantly worrying cross linking won't work though it was the best option I felt at the time.

I know there are more advanced lens options such as eye print pro and laser lens in the states and I'm willing to look at everything but again am in hopes for to much to have the symptom at least reduced?

Thanks for any answers I do hope to not have to travel and find a lens at this centre that reduces some symptoms

Idk about intacs and would do them if it came to it but I'd rather not at this point and again I've never used or have been fitted in my life.

Sorry for any horrible spelling very upset while typing hope to edit later in the day and fix it


Sorry for my rambling I keep all of this super bottled up along with my fears for the future.

It's bound to be scary when you realise things aren't right with your eyes. But now you've had the diagnosis of early keratoconus, you've had crosslinking which should stop any progression, and in a few weeks time you'll be able to try contact lenses. Sounds like what you've had is a reaction to all the anxiety of the past months, but actually you're now in a good place! As you've discovered, there's now a whole range of different contact lenses for KC so if one type doesn't suit you, there should be another one that will. And you should find that contact lenses will give you much better vision. So I don't think you've got 'false hopes'. And of course, you're not alone. there's lots of us out there with KC. So let us know how you get on. All the best for a positive outcome.

Thank you so much Anne I have no idea why it started upsetting me when it did, I was fine for awhile but I guess after corsslinking the question came up what now?

And I guess with all of the lenses options out there and not knowing yet witch ones will help I got overwhelmed, I also apologize as I don't mean to make it sound like I have it the hardest, it was just the first time I've kind of let this all out.

As for the corsslinking that is our hopes when we do it, because of my age and the fact my vision had got a bit worse from when I saw the oothmalogist to the corneal specialist she did not want to wait around to watch for progression as she felt it had lots of time to progress and corsslinking was needed.

After all my resaearch into KC months prior I had the same feelings signed the forums and booked the appointment, I also wonder if I made a mistake not insisting on intacs.

Both doctors felt it was way way to early into my KC to do intacs and it would make lens fitting more troublesome and I've read mixed things about intacs so I agreeed and just went with crosslinking, I guess it's the fact I keep second guessing myself

No apologies needed - this is the place where you can talk about your feelings with people who'll know where you're coming from. And bear in mind that forums like this one are full of posts about the problems of KC - the people who get on fine with their lenses, or are really pleased with their crosslinking results either don't post in the first place, or don't bother to come back to tell us about how happy they are!
The advice you got re Intacs sounds right. They don't work for everyone, so why have a surgical procedure at a point when it isn't needed?
All the best.

Very true I hope cxl has halted any progression I'm feeling a lot better and pretty excited to try out some lens options just talking to you has made me feel I'm able to tackle and fight KC the best I can and hopefully help others.