Contact lenses

[GarethB]

Lenses are very different, my lenses are both blue, the right slightly darkerbut that is tohelp with dyslexia aswell as the light sensitivity I have from KC.

As to lenses making KC progress is a very controversial subject. Look at the thread that has recently been locked as things started to get personal which goes against what I feel the board stands for as we are here to help eachother.

[Steven Williams]

Gareth B thanx for that.

As a user of this forum and a patient all I ask for is truth and honesty.

You state:-

As to lenses making KC progress is a very controversial subject. Look at the thread that has recently been locked as things started to get personal which goes against what I feel the board stands for as we are here to help eachother.

Could you copy the link to this thread for me so I can have a read. I do not support censorship but freedom of information and openess. I totally agree with you I come here to try to help myself and in the process I hope that my questions/input is helping other KC sufferers.

There is alot of information on this site now and it would be helpful if it was catagorised relative to the progression of KC for quick access eg. 1. diagnosis, 2. pre graft KCers: (i) spectacle sight correction (ii) contact lens sight correction; 3. pre-post graft period (i.e when contact lenses can no longer rectify vision to satisfactory level; 4. post graft.

Its good to talk much better than the alternative of suffering in silence!

[Barney]

1. does wearing contacts (RGP) aggravate the
KC and cause further progression of the condition or does it stablise it by capping it?
Has anyone (pre graft only) had the condition deteriorate suddenly after wearing lenses

Steven, not sure if you saw the infamous locked thread but I think the position is that there has been very little research into this in the UK or if there has been then the results don't seem to be in the public domain. Where there has been limited research in US university hospitals their published conclusion has been that long-term wearing of contact lenses can cause or contribute to KC in some cases. A separate issue is whether the way lenses are used for people who already have KC promotes scarring or other problems.

I very innocently mentioned this possibility here in passing and was a little taken aback at how taboo a subject it seems to be: so possibly as well not to discuss it or the various possible mechanisms for it happening on these forums.

Whoops just seen that you haven’t seen it. That infamous thread: http://www.keratoconus-group.org.uk/for ... php?t=1957

[Sweet]

People with KC are not normally colour blind so i guess this is why they didn't ask! No my whole lens is tinted but either way it isn't much help to you if they have both edges the same colour!

I do hope that you can sort this out soon, take care ... Sweet X x X

[John Smith]

Hi Steven, thanks for your comments.

Certainly I've never seen a lens with an "edge tint" - mine have always been completely tinted, although I've never been lucky enough to have different tints for each eye. I used to get a tiny "R" or "L" engraved, or a dot marked on the right lens.

As to the KC lifecycle and the options at each stage, that's an excellent idea. We did make provision for just that when we revamped the main site earlier this year, and we hope to put just that sort of information up there.

All the best,

[brigid downing]

Yes I had a pair once with tiny R and L engraved on them. Or at least that is what the optician said - I never actually saw these letters as they were very small and I have an eye condition which limits my ability to see, especially when not wearing my contact lenses!

Once I pointed this out we agreed a switch to colour coded tints.

Brigid

[brigid downing]

On the issue of lenses and increasing/slowing rates of progression - My KC has progressed rapidly since I started wearing contact lenses, but it was progressing before which is why I started wearing them.

There is a correlation certainly, but as to cause and effect, I fail to see how that can be determined on an individual case basis. As an academic researcher i spend much of my working life trying to evaluate the validity of evidence and the nature of correspondance relationships - it practice it is far harder than the uninitiated might suggest.

Anacdotal evidence is not as simply accumulative as the media often presents. if we rest within the positivist paradigm and search for "proof" then that suggests the creation of a (probably quasi) scientific methodology requiring a control protocol- which largely excludes subjective anacdotal evidence. A more post modern paradigm will of course allow a subjective response based on experience, and grant it's validity within its own context, but will never offer proof of anything!

In short showing a correspondance does not necessarily suggest a connection and even a connection is only suggestive of a directional relationship. Depending on how you view the role and purpose of research dictates where you go from there.

For this reason I think the importance of sharing our experince is to offer insight and information to each other, which we each must evaluate in the context of our own individual situation. Heeding the advice that resonates, but allowing our own judgements to filter that which does not.

I don't quite hold that it is true if you believe it to be - but there is some truth in that!

Brigid

[Andrew MacLean]

I always had lenses with different tints for left and right eye. I guess this was necesssary because without any way of marking the difference I'd have spent most of my time with the lenses distributed at random between my eyes.

the only thing that could cause me any problem was trying to remember whether daRk bLue was R or L

I must say that I like the idea of having an R and an L engraved on the lens.

[Barney]

On the issue of lenses and increasing/slowing rates of progression - My KC has progressed rapidly since I started wearing contact lenses, but it was progressing before which is why I started wearing them.

I think the first question to ask Brigid might be whether any attempt has been made in the UK to develop a methodology and if not why that should be? We are unlikely to find any answer if we prefer that the question is never asked.

In the US where there have been studies the conclusion has been that contact lenses can cause keratocus. It’s widely accepted as either one of several possible causes or as a contributing factor. Additionally, it now seems to be accepted that contact lenses cannot prevent the progression of KC as was once hoped and where there is a touch fit may cause central scarring that leads on to requiring a graft.

Having innocently asked the question for the first time the other day I was amazed that, particularly in these forums, simply asking the question appears to be taboo and best avoided. Perhaps the most interesting question is why that taboo should exist?

There are people like me, and I know of another near me, who did not have any symptoms of KC until it developed in middle age after having worn contact lenses for many years. Presumably it would be possible to investigate what proportion of long term contact lens wearers without a previous history of KC later developed it and whether the occurrence differed from the norm. For very obvious reasons, the funding for any research of that kind is unlikely to come from the contact lens industry that some researchers may depend upon.

If the US research is correct in showing that long-term use of contact lenses can lead to KC in people with no previous history then I think it would be important to learn the mechanism to eliminate the possibility of it happening to others. It may be that the problem is caused by insufficient oxygen reaching the cornea, something that has to some extent been improved over the years with newer designs although without research we may have no way of knowing what is “sufficientâ€Â

[Matthew_]

Being in the Navy, I would use green for right (starboard) and red for left (port). However, I think a red tint might be a bad idea!