UK Keratoconus Self-Help and Support Association

Hello everyone

I was diagnosed with KC about 5 years ago and have had to have new spectacles just about every 12 months. My prescription now is :

Left : Sphere=-4.25, Cyl= -6.50 Axis= 105
Right : Sphere=-4.00, Cyl= -6.00 Axis= 88

I don't relly know what these figures mean, but just how bad can KC get ?

don't know how much this will help but I've posted before and its a good close representation of what it's like to see through my left eye without a lens in.

Click here for a comparative image of how I see

I think with most advanced KC you can't focus-see anything beyond a few inches from your face, you can usually still see colors and general shapes ok, light-dark etc, anything else is just impossible without a lens in. But to get to the above stage, it can progress fast over a number of months or years or it can stay steady for years and progress very slowly. With having KC for 14-15yrs or so, I started off wearing specs until they realised it was KC I had (I was only wearing spec for about 6mths), it took me about 4 years to get this advanced in my left eye only, my right eye has only in the last 5 years started to take a dive and I've had to have the lens replaced 11 times during that time. But in the last year things have settled down althou haven't gotten better it certainly hasn't progressed.
I've also found out, according to my doc, that this is probably as bad as it will get in my right eye but with my left I need a graft bc I cant really tolerate a lens in it anymore bc its so steep and almost impossible to get any sort of lens to fit it

Gary

KC is very unpredicatable. It can progress fast, yet on the other hand can halt near enough immediately. It all depends on how progressive it decides to be!

The fact that you are on spectacles after 5 years of diagnosis is a very good thing! I was diagnosed at 18 and by 20 I had to wear lenses......so each and everyone is different.

How bad can it get?.....Well vision can be severely distorted in the medium to advanced stages whereby you cannot see fingers at 12 inches!....or even 5 inches!.....and rely on Contact Lenses. On the treatment side, many make do with Lenses and others need Corneal Grafts as they can no longer get acceptable vision with lenses and their quality of life is suffering......its all about personal choice and decisions.

However!....remember that you will not go Blind!...KC is about the front of the Eye (corneal) changing shape.....and thus not being able to pass-thru light in an even manner to the rear of the eye.....once this "window" has been altered; either with a lens or a transplant.....things generaly get better.....

But from what you have said..I would assume you are quite away from this stage and may not even get to it!.....

In terms of your prescription;

Left : Sphere=-4.25, Cyl= -6.50 Axis= 105
Right : Sphere=-4.00, Cyl= -6.00 Axis= 88

Sphere : This measurement relates to the eyeshape and curvature of the cornea. A cornea that is too flat or too steep will create unfocused images (which we are all to familiar with!)

CYL : This relates to the actual irregular curvature of the cornea

Axis - this is measured in degree and basically determines where the astigmatism is on the eye and at which point the lens will need to be altered to allow for a corrective refraction in the glasses/lenses.

Thats my understanding of the above measurements..but I am sure one of the opticians on the board will confirm/correct if I am wrong.


Hope that helps!

J

Thanks J and Knight

Its a relief to know KC can't make you blind!

from my prescription, can you tell if I am medium or advanced in my KC ?

Gary

Hard to say conclusively from that; but that fact that you are still wearing glasses, and I am assuming you can see to at least driving standard with them?...I would say you are mild........

What can you see with your glasses?...

The optician told me that I have passed the driving standard. At the moment things are a bit blurry with my current glasses (enough to cause headaches), but I am waiting for my new glasses.

I can watch TV on a 26" screen from about 2.5m but am unable to read subtitles at that distance (I hope this will improve once I get my new specs)

Hi again

BTW I only developed KC at around the age of 29 - 30 and it seemed to happen very suddenly, (I had 20/20 vision all my life up until this point)

Is this unusual as a lot of the members here seemed to have developed KC in their early teens ?

Gary

If you passed the driving standards then I am assuming you are seeing 6/9 or 6/12 (averaging it)
With glasses, this may be bordering on mild to medium; however only a checkup and new glasses can confirm that.

Many of us whom were at glasses stage had to make the decision of switching to lenses to get back the 20/20 we all enjoyed. With glasses I stayed until it got to 6/12 and then went to lenses where I enjoyed 20/20 for another 3+ years. So its more a personal decision I guess.

KC generally hits people in there late teens, and then progresses from there (if at all). However its not uncommon to develop it in mid thirties and above...however there seems to be talk that those that DO get it at these stages generaly do not get to the advance stages; however do take this with a pinch of salt as research is abit flaky on this!

Hope that helps

J

Hello Jay here
not so sure how much help i can be but i was diagnosed yesterday and they say they were sure i had it in Jan 04 which would have made me 14 and i was given RGP straight away. It sort of struck me over night, and it seems to be getting worse all the time each month i notice a difference. Its daunting but i have found some support i didnt even knew i had which is good.

i am 16 but its believed my case developed 4-5 years before the point of diagnosis. anyway, my left eye works fine. my right eye is how described in the picture, i cant focus at all!

i hope it doesnt progress further and not in the left eye either.