UK Keratoconus Self-Help and Support Association

After a few years of being told that my KC is relatively stable, I was recently told both eyes are showing progression. One eye, previously crosslinked, has progressed by '1 diopter' and the other by '4 diopters' over a period of about 14 months.

I was advised to start considering crosslinking for my other eye, though was told that the hospital can't offer it on the NHS at present, but they hope to be able to soon.

I tried asking how significant the change is...I have no idea how much a '4 diopter' change over 14 months is...but didn't really get a definitive answer (it is not the consultant who did my crosslinking previously).

I now don't know whether I need to make private appointments to look into crosslinking urgently, or if it's only a minor change, and not really anything to worry about! I have an NHS follow up in 9 months; my KC is relatively advanced, I use Rose K2 lenses with piggy backing.

If anyone can offer any advice, or words of wisdom, i'd greatly appreciate it!

Many thanks in advance.

Ian

The yardstick most hospitals seem to use when deciding whether KC has progressed and so qualifies for CXL on the NHS is a change of 1.5 dioptres in 6 months. Though the other important factor for crosslinking is the thickness of the cornea which needs to be 400 microns or more. So if the thickness is well over that, there's less urgency. Did you have a scan done which would give you those figures? Then there's the age factor - KC is supposed to stabilise around the age of 40 so tends not to be done for people who are over or near that mark.
Anne

Thanks Anne. I wasn't given any other figures (maybe i'll get more detail when the follow up letter eventually arrives), however as far as i'm aware from previous appointments, the thickness of the cornea is not an issue.

The reason the hospital can't offer me CXL on the NHS at the moment is because they don't have the machine/equipment yet, though they think they will have soon, and said they'd let me know at that point.

Thanks again.

Ian