Late keratocnus diagnosis .. please help.

[Fatima_xec]

Hi everyone I at the age of 30 have recently been diagnosed with KC in both eyes all these years my optom would just say the poor Vision in my left eye was a lazy eye but in the last year I was having light sensitivity and halos and ghosting and just pain in the eyes I’m a mother of 2 and I’m extremely worried I’m going to loose the vision my my slightly good eye iv been referred to a hospital but I won’t be seen till January 2023 at earliest I’m just scared as I’m so late to be being diagnosed … I’m seeing a lot of floaters and they are increasing in size i dnt know wher to go .please if someone can help me

[Anne Klepacz]

Hi Fatima and welcome,
Please don't panic! KC is very variable between one individual and another, but any changes happen slowly over many months and years. If you've been getting reasonable vision with spectacles, then it sounds as though your KC is relatively mild. While most KC is diagnosed in the teens or twenties these days, it can develop later than that, even in the 40s or 50s. Can you tell us a bit more? How did the diagnosis come about - was that with your High St optom? Did you have topographies (scans) done of your eyes? Have contact lenses been suggested to improve your vision?
In the past, late diagnosis was very common. I had also been told I had a lazy eye and I was several years older than you when I was finally diagnosed. By that stage, I'd already been wearing rigid contact lenses for more than 5 years and it wasn't until I was having difficulty seeing with my lenses that I was referred to a hospital. I eventually had corneal transplants which enabled me to carry on working full time until I retired. Of course, these days collagen crosslinking can stop KC progressing, so early diagnosis is much more important. But that is something the hospital eye clinic will assess you for. I know January seems a long time to wait, but Covid has meant delays on all hospital appointments and a few months is unlikely to mean any significant changes in your eyes. Floaters are very common and are usually harmless though annoying! Of course, if anything suddenly changes, then don't be afraid to go to A&E. Whereabouts in the country are you? Have you been referred to a large hospital eye department?
I hope some of this helps, but do come back with more questions.

[Fatima_xec]

Omg thank you for the response it means a lot… it’s been. Hard few weeks as I’m getting a lot of pain in my eyes and headaches …

I went in for an average optom appointment I was just telling the lady I really struggle atm and my lazy eye seems to of gotten worse and she looked at the eye and mentioned keratocnus and she checked the right and said she thinks both are affected as I’m having symptoms now in my right … but even with the glasses I’m struggling I won’t dare drive at night I’m unsure if I’m even road legal she’s never said no to me . Sorry I’m bad at explaining things … I’m from west yorkshire and Iv been referred to pinderfields Wakefield .
hospital . Btw may I ask you about your transplant and how you found about your KC .

[Anne Klepacz]

Driving at night was the first thing that went for me. Being able to read a number plate in daylight is no indication of how safe we are. So whether you're 'legal' or not, if you don't feel safe with the halos and glare and the reduced vision at twilight (all of which applied to me) then you're right to stick to driving in daylight.
I was diagnosed 40 years ago, way before crosslinking had been invented. Like I said, I was wearing rigid contact lenses (soft lenses weren't common back then either!) for what I thought was just bad shortsight. So I was referred to hospital when I was struggling to see with my contact lenses and my keratoconus was already very advanced. These days, fewer and fewer people with KC get to the stage of needing a transplant with the availability of corneal crosslinking to stop progession and much better contact lens options. Do drop an e-mail to anne@keratoconus-group.org.uk if you'd like to join our mailing list for newsletters and other updates. And do look at the newsletters and leaflets in the Publications section of the homepage of our website - you'll find lots of useful information there.