Keratoconus Survey - Origins

[Zopal]

Dear all

As a Keratoconus sufferer I refuse to believe that no one really knows what causes Keratoconus or the evidence that the disease has genetic origins, not for all cases anyway.

I want to do a survey on what I think is an alternative origin for Keratoconus development. I believe that excessive rubbing of eyes prior to Keratoconus diagnosis is a significant factor.

I would appreciate it you could answer, in as much detail as you prefer, the following questions.

Prior to your Keratoconus diagnosis:

1. Have you suffered from eye related allergies (such as hayfever) that caused you to excessively rub your eyes?

2. Have you suffered from other eye related problems (such as milia) that caused you to excessively rub your eyes?

2. As a child/young adult were you prone to crying more than usual which caused you to rub your eyes?

3. Did you tend to rub your eyes when you wake up in the morning?

4. For the questions above, did excessive rubbing cause frequent redness of the eye and/or 'tear burns' of the skin around the eye?

Thanks for your time.

Zopal

[jayuk]

Zopal

I am also shocked that even today in 2005 we dont know what causes KC...but alot of it depends on funds available for research for this. I would suspect that if there was a large pool of cash available a more significant study could be performed.

Speaking with Lynn on the same subject not so long ago, India and Trinidad seem to have the largest amount of KC sufferers in the world. It would be relatively cheap; when compared to doing a study in a western country, in India. But again, its funds and skills!

But I do feel we have got closer. Its clear now that KC corneas have a reduced amount of a Protein Enzyme in the eye which has been found to be partly responsible in the breakdown of the corneal structure. The next stage I gues would be to find out how this could be fixed. Reversal of KC is a whole different topic and I cant see there being any kind of cure for that for many years!

The eye rubbing is common amongst all KC sufferenrs but also hay fever sufferers. Yet some hay fever sufferers dont have KC?!...I have a theory on KC.................

The eye rubbing is a trigger for the KC; whereby each time the eye is rubbed there is trauma and cell/corneal damage. The time is takes for that to repair is not enough; thus when the person rubs there eyes again the damage gets greater.
(Similar to diggin a hole 1 meter down, then refilling it only 0.5 m each day) Then digging another 1Meter down etc etc.
Now as the damage to the cornea gets too much, the change is so great that the cornea does not know how to get back to its original shape. With this in mind, some kind of reaction takes place in the eye whereby the whole structure of the cornea gets worse to the point where we have FUBAR corneas!!

Thats my theory on it anyway!!!

[Lynn White]

Zopal..

A little confused by your first sentence... do you mean you refuse to believe that the disease has genetic origins? Or that you think that people know but are not saying?

Contrary to what many people think, medicine as a global entity has not even got the common cold under control let alone anything else! There are many MANY things we cannot for definite explain why they happen - particularly when they can be multi-factorial.

As for eye rubbing - it has already been established research wise that this IS a factor - yet not everyone who rubs their eyes gets KC. New evidence this year has identified a locus for A KC gene, so genetics is also a factor.

The problem is that diagnosed KC patients are not in that plentiful a supply to provide enough data for research. And that is actually an interesting point because I feel there are an awful lot of sub-clinical/undiagnosed cases out there.. and only when we look at them as well will we get enough numbers to contribute sensibly to research.

Lynn

[John Smith]

Hi Zopal, and welcome to the forum.

I don't want to disagree with Lynn, but I think it only fair to put the other side of the story to you.

You have suggested that eye rubbing can be a trigger that causes KC to develop. Fair enough. But why rub the eyes in the first place?

It may be that the eyes itch because of latent KC. In other words, we have a chicken and egg situation. I accept that rubbing may worsen KC, but I don't believe that it's a cause.

In my case:

1. I have a slight hayfever apparent under the slit lamp, but otherwise not. No eye rubbing before KC diagnosis.

2. That was a long time ago, but I don't think so. What's a usual crying total anyway?

3. No.

4. No.

[Lynn White]

Ahem John.. just trying to negotiate exactly what you are saying lol.... and all I said that research shows eye rubbing is a factor - in so much as there appears to be some sort of link between eye rubbing and KC - but whether it is the chicken or the egg - as you so rightly say - is a tad unclear as yet...

So I am not sure what you mean by the "other side of the story" ???

You say eyes may itch because of latent KC - that is as a fair enough reason as any - as is the fact that vision is often better when the eye is pressed or rubbed, which is why many children with undiagnosed refractive errors often present with eye rubbing or blinking. I saw a (normal) patient the other day complaining of having to keep rubbing her left eye because it seemed filmy.... it turned out she just needed distance glasses! Once her vision was clear, she stopped needing to rub it.

It would actually be interesting to hear if KCers stop rubbing their eyes if they get good vision and comfort with contacts??

Lynn

[GarethB]

I think what Dr Raemesh said was very informative regarding the make up of tears and many KC sufferers do not produce tears properly in that one component of the tears may be defficient. This may be why some people say they get gloopy stuff over their lenses, part of the tears are just too viscous and need something to break the surface tention.

So eye rubbing a cause no, a facter in KC progression; possibly, I am undecided on this one. My brother has rubbed his eyes just as much as me and so far no signs of KC and he is older than me.

Perhaps next time I visit him, we shoul pay Lynn a visit and see if she can find signs of KC in his eyes?

Gareth

[jayuk]

Hmm interesting but you see although your brother has been rubbing his eyes...his corneas may be able to recover from the cell damage done each time ANY person rubs there eyes?.........

Maybe KC corneas dont have that recovery ability?.....maybe the enzyme thats been found not to be in sufficient amounts in KC eyes plays a part?

So I dont think noone can conclusively say that rubbing eyes DOES or DOESNT cause KC

But would be good to actually have evidence of this either way!