Keratoconus, my story by Claire

I think, like many others my diagnosis of Keratoconus (KC) was somewhat a stressful one. After a series of peculiar prescriptions, and me taking it upon myself to benchmark a couple of opticians I was referred to The Bristol Eye Hospital. Even at the point of referral, my optician didn’t explain what she was referring me for, so I wasn’t even able to adjust my expectations of my day at the eye hospital. Needless to say there were tears and that was before I was even diagnosed!

So.. I was diagnosed in 2005, when I was 23 years old. I had only been wearing glasses from the age of 21, just for distance and screen work. So by the time I was 23 I was wearing them all the time, I do wonder what happened between that time to make such a change occur in my eye sight. (I am still wondering why, perhaps I should let it go!) It’s 2012 now and I am still wearing my glasses, my prescription has changed a few times over this period, I did go a few years avoiding getting a sight test done because I didn’t want to have the same news of “your condition has got worse/changed” But since 2010 I have been seeing Philip Jaycock at the eye hospital and he’s been brilliant. I see him ever 6 months, and over the course of the last two years my right eye has changed very little and my left eye more significantly.

At my last appointment Phil suggested that I consider collagen crosslinking. There were a few stress factors with this news,
1. The cost of it privately as at the time there were only two places in the UK that offer it on the NHS so unless you are prepared to fight your way through local funding requests with your PCT to be referred to a different NHS trust you have one option, pay for it.
2. The reason why the NHS are not providing it widely across the UK is because of cost & lack of clinical research backing up the long term effects of the treatment.
3. Because of the above NICE do not recommend that the treatment be made widely available.

The aim of crosslinking is to speed up the ageing process of the cornea, making it stronger, and thicker and flatter. With the ultimate aim that those with Keratoconus see the condition halt/stop. Given that Keratoconus is a progressive condition, it is likely that my condition would get worse, so with this fact in mind and a lot of reading into research that has been done so far I decided to go for the treatment.

I had the treatment at Moorfields Private, by Vincenzo Maurino. The process as a whole included a pre consultation, the treatment itself and post op follow up. So just three appointments. The treatment itself was pain free, I had riboflavin drops administered to my eye every minute for twenty minutes, followed by 4 minutes intensive light therapy from a UV light. (and more drops over the 4 minutes) The nurses were great, chatted to me and kept me distracted, afterwards I took my carrier bag full of drops and took myself home, I did have pain following the treatment as the anaesthetic wore off, but this discomfort was only for the first 12 hours. You just need to be hot on the pain management as soon as you’ve had the treatment, I will know for next time (if I need my other eye doing) and won’t wait for pain to start!

My follow up appointment went well and I had the bandage lens removed just two days afterwards. I used antibiotic and steroid drops for 4 weeks post op, and I have had no issues at all. This all happened in September and it’s now December and it’s like it never happened. (In a good way!) I have my next appointment with Phil in Bristol in January, this will be the first appointment since treatment so will be interesting (and perhaps a little stressful) finding out whether the topography of my cornea has changed. I am excited and nervous at the same time, it’s weird having treatment that doesn’t “fix” something, and only hopes to stop something getting worse. .I will be so grateful if the condition stops in my left eye, but have to be realistic in the fact that this is still treatment in trial and hopefully I am providing myself as a statistic for the future and keep my fingers crossed that it works.

I have blogged in detail my crosslinking experience if you want to read in a bit more detail you can find it here:


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s