UK Keratoconus Self-Help and Support Association

Hi, I've been diagnosed with Advanced Keratoconus and a very thin cornea at the age of 34.

Is it unusual to feel like my vision is not too bad. Does Advanced Keratoconus always mean that you have poor vision and extreme astigmatism (Shadowing/Halos etc) or does it just mean that your cornea is very steep?

I ask this because I feel like my vision isn't too bad. The Opthalmologist I saw had never heard of Scleral lenses and seemed to hint that grafts or intacs may be my only options (too advanced for cross linking or rgp lenses). He also said that at my age the progression should be at or near 0 but I feel he only said that to counter the bad news of my limited options, and it ultimately might not be true.

Anyway, please let me know if you have Advanced KC and if you feel your vision is subjectively OK, does it vary between people?

Thanks

"He also said that at my age the progression should be at or near 0 but I feel he only said that to counter the bad news of my limited options, and it ultimately might not be true"

From personal experience that is certainly not true.

KC is a progressive and debilitating eye disease.

You raise a very interesting question, mz1984. I found this definition of the stage of KC http://amkca.org/2012/03/determining-th ... ratoconus/
where the criteria are the steepness of the cone and the thickness of the cornea. No mention at all of visual acuity! I'm sure there are other definitions which take other factors into account. One thing that would make a big difference is whether there is any scarring on the cornea, which would make symptoms like haze and ghosting worse. The position of the cone and where the cornea is most steep will also make a difference and both of those factors would vary from one individual to another. I was very shortsighted even without my KC while other people may be less myopic so that's another variation. Progression of KC is also very variable - most people with KC never get to the stage of needing a corneal transplant, although somewhere between 10 and 20% do (hopefully that figure will fall now there's CXL). And most KC does stabilise around the age of 40, when the cornea tends to become thicker with age, though there's always exceptions to every rule.
It would be interesting to hear from others who've been told they have advanced KC - I suspect there will be quite a bit of variation.
If you'd like our information booklet on KC do e-mail your postal address to anne@keratoconus-group.org.uk
Do you wear any sort of glasses or contact lenses currently? And have you been referred for contact lenses?

The key question is what stage of progression does keratoconus become diagnosed professionally as "Advanced KC"?

What is the objective criteria?

@Anne Klepacz, thank you very much for your thoughtful and considered response, I really appreciate it. I just have glasses which help a little. My KC is worst when I'm looking at anything against a white background, so they really help to sharpen black text against a white background for example. I was told by the first Opthalmologist I saw (who had never heard of Scleral lenses) that I was too advanced for contact lenses, rgp lenses or CXL based on my corneal thickness being at 430-µm

Atm i'm leaning towards scleral lenses, perhaps in just my weaker eye at first. I was told that as my corneal thickness is at 430-µm at its thinnest point that CXL isn't an option for me but then again I've read forum posts of people with ~410µm getting CXL so not sure about that... The steepness of my corneas seems to be only on the bottom half of my eyes and the haloing and shadowing is distinctly stretching down. If I squint my eyes, the shadowing disappears completely, and I can see sharply.

Scleral lenses should be a good option, as they don't touch the cornea so there's no danger of them rubbing an already thin cornea - though not all hospital clinics provide them. I'm puzzled by what you've been told about CXL as the cut off thickness is 400 (and some clinics use drops to temporarily swell the cornea even for thicknesses below that). But thickness isn't the only criterion with CXL. For example it isn't usually done if there is central scarring on the cornea.