UK Keratoconus Self-Help and Support Association

Hi all, so I’m a 31 year old who got diagnosed with KC about 6 years ago - the vision in my right eye deteriorated significantly over the course of the next few years, and 3 years ago I had a DALK transplant which unfortunately hasn’t helped a lot. My eye glass prescription is now -4.75 I’m the CYL measure which helps somewhat.

I’ve been very lucky though - my left eye has been almost perfect. It’s meant my general vision is fantastic, because my left eye is doing all of the work. However this also terrifies be because I know KC usually affects both eyes. If my left eye starts going bad, I’m not going to be able to compensate for it. I’m a software developer and it would impact my job severely

I had a routine appointment with the hospital today and he said my left eye looks good but he did see an ‘iron deposit’ ring typical of keratoconus. He said it’s certainly possible for the disease to progress in my left eye until I’m at least 40 but if it did I would be 'unlucky'. I did hear before that after 30 it generally stays stable so this has worried me.

I’m just wondering if people have been in a similar situation, and what your outcome was? I can’t help but feel like having one eye completely unaffected is rare i had an eye test recently and the prescription in my left eye has changed slightly which it hasn't in years

This is similar to my situation - Coming up to 30 I had moderate KC in one eye, and mild in the other. I decided to get CXL on the worse eye, and it went well. I wasn't sure what to do on the better eye - I obviously didn't want it getting worse, but then it didn't seem to be progressing either.

I found this tough mentally and was getting quite stressed about the decision. Ultimately I decided to go for it, at the end of the day it went well in the other eye and should have made the chances of my better eye getting any worse very slim.

Turns out it was the wrong choice to make as the procedure had complications and now my 'better' eye is fact my 'worse' eye I realise I am just one case out there, but my personal recommendation would be to keep tracking it every 6 months and if it doesn't get any worse - Leave it alone!

Hi

Yes, I have been in this situation. My right eye used to be the 'better' of my 2 eyes in terms of the quality of sight I got out of that eye. Over the past 4-5 years that changed and my left eye became the better of the 2. Its resulted in me getting an increasing frequency in headaches. The condition has been stable in the left eye for several years now. The right however continued to progress. I'm 37 now. As a consequence, my consultant recommended I have CXL given the continued progression and the fact that my age hadn't stabilised things.

I've recently had the CXL done. My consultant said it would take 6-12 months to ascertain if the procedure had worked.

Yes, I was first made aware I *may* have it back when I was 30 then I had noticeable progression till I was diagnosed at 33. CXL was carried out on my 34th birthday (happy birthday!) to my left eye then 12 weeks later on the right which arrested the progression.

Wasn't diagnosed with KC until 31ish. Has changed somewhat in the 20 years since then, luckily been able to cope with lenses throughout and not had any surgical interventions.

I developed KC in my left eye in 2011, when I was around 28. And it didn't develop in my right eye until 2014, where I was in my early 30's. It progressed very slightly this year and I am now 37.