UK Keratoconus Self-Help and Support Association

Hi there, my names Emma and I too suffer from Keratoconus in both eyes - right eye worse - diagnosed 4 years ago at 18. I started with RGB lenses but found I was barely able to keep them in an hour without pulling them out - I kept this up for 3 years. I spoke to my contact lens consultant at Gartnavel, time and time again about my situation and I felt he never truly listened to my efforts and troubles. My last appointment at Gartnavel for my lenses was over a year ago as I found I was quite clearly repeating myself and I was getting very distraught over the situation - my consultant did not link me to any other options I could take so I did not bother returning to him, maybe I was wrong in doing so but I felt I was getting nowhere with him.
I drive and I am currently a design student working mainly on computers with intricate detailed work. I don't draw anymore as I find it too difficult to concentrate long enough without my vision going blurry. I wear my glasses more often than my contacts now. My glasses are good enough for me driving (I still get my eyes checked regularly for changes - and reading etc but there comes a time during the day when its not enough and my eyes become too tired from trying to focus so much.
Well my question is, after so much rambling, does anyone know of any areas within Scotland that carry out cross-linking - even if that is Gartnavel Hospital? I am desperate to get this sorted. Anmy information would be appreciated.

-Emma

Hello Emma, I attend Gartnavel and have only ever had positive experiences there. I am sorry that your experience is not the same as mine.

I guess that the answer to your question is in two parts.

If you are asking about Crosslinking on the NHS then I think that your options are limited. If you are talking about Crosslinking as a private patient then your options are wider; you could google "Crosslinking in Scotland" for a list of places where the procedure is offered.

Even if you do go for CXL be prepared that it's likely not to make your vision any better... so you're still going to need to persist with glasses and/or contacts afterwards.

Hi Emma,

There are potentially lots of options however your consultant would be best positioned to inform you of them. That said they do seem to have their prefered options so they she/he might not try "everything". CXL (basically) only seeks to stabilize not significantly improve vision (though I really wish it would).

Anyways perhaps ask about special lenses Kerasoft/Clearkone/scleral or piggybacking (hard on top of soft, was great for me aside from wear time). If they normally don't deal with those options ask to be referred to someone who does to try at least for your own piece of mind (it's a reasonable request). Though it often takes a long, long time to get fitted for these options but there aren't often "perfect" options so it's all a balancing act.

My right is much worse than my left too. For many years I went with nothing in my right and got on pretty well. Though I wasn't driving so it might not be a credible option for you to try.

Best of luck,
Andrew

Hi there

Coincidentally, I'm a graphic designer from Scotland.

I'll avoid going into my long-winded history, but can tell you that Edinburgh Eye Pavilion does cross-linking (I was told that in January by a specialist there).

Best wishes.

Caroline.