UK Keratoconus Self-Help and Support Association

Hi all,

I've just been diagnosed with KC, so still not entirely sure what to expect both in the short and long term. But am so glad I found this forum!!! I noted another thread about not using the 'net to "symptom serach" and how true is that!!!

Decided that I should try contact lenses. Well, that was about 2 months ago and I still can't seem to settle with them. I've been practising every week now and it is still taking me more than an hour to get one lens in - thats in the eye not in the centre! If I can't get them centred and have to start "moving" them (for some reason my lenses seem to always slip into a corner and then won't move) my eyes start to redden and close.

I really want to arrest the progression of KC and have been told that GP lenses are the way forward, but my worry is that I just can't tolerate them. Yesterday i sat down for nearly two hours and still only just managed to get them into my eyes. Byt the time I had finished (given up) it looked like I had been crying forever and my eyes were barely open. My fear is that I just won't be able to live with them, yet I'm being told that it's the only way that I can hep with my KC.

If it's relevant it's mainly affecting my right eye, which I've been told is quite severe, the left is over compensating, but is affected only slightly.

So, I guess my main questions at this point would be thus;

1) how long does it take to get comfortable with the GP lenses?
2) What is available to me treatment wise if I can't use GP lenses?
3) What does the future hold for me with KC?

Apologies for the rather long maiden post, but I can't seem to get any reliable answers anywhere else.

LondonExile

Welcome to the forum.

What lenses have you tried? There are many different sorts, and it may be that the lens you have tried so far is not entirely suitable for you. There are also many different sorts of RGP lens.

After many many years with small RGP corneal lenses I got to the point where I could not wear them any more. The lens that then worked best for me was the scleral. Many people on the forum wear piggy back lenses, some wear hybrids, some wear sclerals. In your place I'd go back to the optometrist and explain the difficulties I was having with RHP corneal lenses and ask about other options.

How experienced is your optometrist at fitting eyes with KC? There is something of an art to the process, and some optometrists develop special practices for KC patients. Many of us are seen in hospital optometry clinics and in the private sector there are some who specialize in this sort of service. I think that in the "Members only" section there is a list of optometrists who have been found to offer a good service to patients with KC.

Take care. All the best.

Hallo London Exile and welcome.
Where are you exiled from and to? - I'm an exiled scouser now living in London.
I think Andrew is right that your first avenue is to ask about different types of contact lenses - you might have better luck with another type.
There is also a fairly new treatment called variously CXL (Collagen Cross Linking) or C3R (corneal collagen crosslinking with riboflavin). This won't "cure" the KC but aims to "stiffen" the cornea and slow down the KC's progress. It is not available everywhere yet, so you would have to ask your doctor to refer you to one of the hospitals where it is done - there are some trials under way.
There are lots of threads about CXL/C3R and descriptions on the home page.
There are other options too - including Intacs (rings inserted surgically into the eye to stretch the cornea flat) and corneals transplant operations - these generally are avoided until other options have been tried out.
Incidentally, is it also possible that the contact lenses you have just don't fit as well as the should? - and you'd get on better with a pair a slightly different shape/size and hence different fit to your eyeball? Has you optometrist checked this out and tried adjusting the fit?
Good luck with it!
Rosemary

Hi LondonExile

I'm kind of guessing here as we can't predict what your optometrist will say regarding lens options, if you do get a better or more successful set of RGP lenses however I can tell you that in my case it took me about 2 months to get comfortable with wearing both my left and right contact lenses, in fact I found getting them in was the biggest struggle for me initially.

In all however it has taken me until about the start of May this year to become really comfortable with putting them in and wearing them, I also didn't start driving regularly again until recently, loving that I now have probably better vision than I did when I took my test my test .

The answer to your first question however is that no one can tell you exactly how long it will take you to become accustomed to whatever type of contact you end up using I'm afraid, every case of KC is individual and this answer also applies to your third question. What does the future hold for you regarding KC? Same answer unfortunately, every case is individual and for some people it will work out better than others, that said however there are far more treatment options available now than there were when some of those posting on here were diagnosed and as mentioned above, there have been many strides in contact lens development so you'll just have to be patient and in some respects just go with the flow.

When I was diagnosed last year though I almost believed or in fact I did initialy believe my life was over as the KC was picked up during an eye test prior to attending to the Royal Navy Admiralty Interview Board which I had spent most of my life working towards, really big downer. However none of us can predict what the future will hold and certainly what twists and turns our cases of KC will take, the best advice I can give you from personal experience with regard to your future and KC is (and I'm plagiarising someone's tag line here but its true) Don't let KC run your life, let your life run your KC. I've taken this to heart and intend to providing the medical proves satisfactory perhaps see about learning to fly next year. Have checked out all the CAA regs I can find and a number of flying clubs, one even spoke of contact lenses including RGPs and said that if you could wear them for up to 8 hours a day then that was good enough for them It may be the case that with my condition I may perhaps only be able to fly myself around or with a co-pilot but I'll give it a go.

For now however I'd recommend you concentrate on getting your lenses sorted and not worry too much about the future except to say that if there is something you want to do or to try then do it, if it'll make you feel any better though, about this time last year I was certain that everything in my life had gone bad and that I would never get used to RGP lenses and a number of other bad thoughts. Now however I'm completely changed from that person I had become back to the one I have always been, always keen, always interested, nothing beats me etc. Mostly now however I find putting RGP lenses in a doddle and although I still set aside a half hour to put them in, I can have the whole process done in less than ten minutes or even faster and wearing them now feels totally normal and not weird in any way.

So whilst at the moment things may not be going as well as they could, they should get better and hopefully by this time next year your first experiences with RGP lenses will be a faint memory and one that will leave you thinking "Now why was that so hard?"

Good Luck for the Future

Jez.

P.S. Don't worry too much about how long your posts are, you should have a read of a few of mine in the non-kc chit chat section, in fact this one is pretty long as well, oh well .

Hi London exile

I just want to pick up further on the statement "I really want to arrest the progression of KC and have been told that GP lenses are the way forward" and emphasise that RGPs do NOT halt progression. The only procedure that has shown any sign of doing that is CXL (cross linking) as mentioned in other posts. I just do not want you to think that you have to wear RGPs in order to stop your KC getting any worse.

Contact lenses are used when acceptable (to the patient) vision cannot be attained with spectacles. To this end, any contact lens can be used that does the job visually and is comfortable. These can range from RGPs, obviously, but also include soft lenses for keratoconus, piggy back systems (RGPs on top of soft lenses), hybrid lenses (rigid centre, soft "skirt") semi sclerals and sclerals. Thus there are many options out there for you to try if you cannot get on with RGPs. None of these will halt the progression, though.

If indeed you are actually quite comfortable with your vision in glasses, then stay with that for now and perhaps investigate CXL if you are anxious to stop progression.

I would also recheck exactly what your fitter said!

Welcome London Exile... I agree with all the other comments but would like to add that you are probably struggling to insert your lenses because you still have the reflex which closes you eye when a foreign object approaches. I was coached by a particularly patient optometrist on how to insert the lenses, and basically the best way is to put the RGP right on the centre of your eye. I suggest that you practice bringing your finger right up to your eye- looking all the time at the tip of you finger- don't touch unless your hands are V clean... do this as an excercise as often as possible...although not when people are watching- you will look rather silly.. HEE HEE.... This helped me, and I can now control that reflex. it literally takes me 10 seconds to put my lens in my eye (the ungrafted one).
It is a very hard process... let us know if it improves or whether you have moved onto another lens type.

Hi,

Just wanted to say thanks for all the helpful replies. I knwo it's not the most major thing that you could ever be diagnosed with and for a while I thought it was just me. BUt having read your replies and other threads here that is no longer the case. Thank you.

I've got another appointment this coming Saturday, when I'll try to get the lenses in both eyes (hoping to do it in a personale best time of under TWO hours!) But I'll be sure to ask the my lens "coach" about the differing types of lenses. I've alsi enquired about the Collogen Cross Linking treatment as well. So I feel like I'm now starting to become aware of just what can be doen with KC.

Again thansk to all.

Lynn, so glad you pointed that out about the lenses. They will not stop progression but they are the best option if you can make it happen. The main thing is try different techniques and lenses at first. That's certainly what I tried. I also found this time of year is pretty pants if you have hayfever. If so, you might find things improve over the year, I noticed you said two months which means pollen could have been an issue throughout. But I'm getting ahead of myself, you may not have hayfever.

Hey there! Welcome to the site, glad you found us!!

Oh dear me ... lenses, what a lot to think about eh?!!! Everyone is different and will tell you so many things, what to do, what to avoid and the best tips on putting them in and out! Take this all with a bit of salt and experiment!!! We are all so different when it comes to being able to put a piece of plastic in our eye and you will soon learn what you want in the form of a contact lens!

I have never been able to see with glasses, so for me it was better to play about with a lens at 14 to try to get better vision. In playing this was exactly what I did! From leaving them in 24/7, to taking them out and rinsing them with tap water or in my mouth until I grew up and learnt that so much can go wrong if you don't look after your eyes and lenses properly!! This is all experience and it will soon come so naturally to you.

Now I wear a RGP in my right eye which I piggy back with a plain soft lens underneath to make it much easier to wear in terms of comfort. I read that it takes you a long time to be able to position your lens? I have learnt that if my eye is too dry that it will prickle, itch and really hurt so I use systane twice daily and make sure that I put a drop in ten minutes before I put my lenses in so that my eye is nicely wet. I also use Blink eye drops when I have lenses in as this helps so much when your eyes dry out. If you put your lens in and slowly close your eyes to try to get it in a good position as this can help. Sometimes just moving your eye can centre it properly.

Keep trying lenses until you find one you like! I have tried most lenses including hybrid and scleral and have gone back to a RGP as this was the best for me.

Wishing you the best of luck!! Hoping you can work out your lenses soon! Love Claire X x X