Message from the Editor

Help others benefit from your experience. There are two major difficulties with Keratoconus:

a) No one has heard of it or can even pronounce the name

b) You never meet anyone with the condition.

That is why ‘Member Stories’ are so important. We all have different needs and find a variety of coping strategies. Stories can be a useful way of getting the message across to friends, family members, teachers, and employers. It may be something as simple as sitting with your back to a window. How can a teacher understand that a light adjacent to a blackboard can completely obliterate what is written on it? Or the worst, why don’t you wear a pair of glasses?

A simple story or illustration may be all that is needed to completely change someone’s perspective. How can another person appreciate that you could drive home quite legally after a day’s work, take your contact lenses out and become technically blind and incapable of crossing a road safely?

If you have a Keratoconus story to tell, I would love to hear from you.

David’s CXL Story

In December 2020 I underwent cross linking at Birmingham Midland Eye Centre. The procedure was on both of my eyes and I had the operation under general anaesthetic. I am writing this 6 weeks after the operation, so it is all fairly fresh in my memory.

Me and Signing Up To Cross Linking

I was diagnosed with KC as a teenager over 10 years ago. As a teenage boy and then someone entering their early twenties at university, I didn’t want to hear or talk about KC. It’s only in recent years that I have made more of an effort to look after my eyes. I had heard murmurings about cross linking over the years, but it was never something I had considered having done. It was only when I went for my last routine scan of my eyes in November 2020, and was told my condition had deteriorated again since the previous scan, did I decide to sign the forms and join the waiting list for cross linking. I only signed them under one condition however – I must be put to sleep for it. Having heard the consultant talk about the process of cross linking, it sounded like my worst nightmare. No chance could I have that done whilst awake!! I’m pretty sensitive about my eyes at the best of times, so no way was someone scraping a layer off of my eyes with me awake! I was told choosing general anaesthetic would increase my waiting time for the op, and that combined with the Covid situation, I was looking at a lengthy wait.

2 or 3 weeks had passed since being put on the waiting list for cross linking. I wanted to let my work know that I needed time for the operation and I wanted to give them a heads up of when this may be, so I randomly called up BMEC to see if they could give me an estimated date of my op. I was sat there thinking they wouldn’t be able to give me a date, or they’d say Spring/Summer 2021. The response was ‘can you come in December 29th?’ My response was ‘wait, you mean December this year?? In 2 weeks’ time??’ I must have gotten very fortunate and booked myself in somebody else’s cancellation. 

The Operation and Recuperating

In these Covid times, I had to self-isolate 2 weeks before the operation. A few days before going to the hospital I had to take a Covid test – that wasn’t a pleasant way to start Christmas Eve! I also had my temperature regularly checked whilst at the hospital. All was safe. 

As for the operation itself, I cannot tell you anything about the experience. I have heard various stories from people who have had cross linking under local anaesthetic, and I have not heard any horror stories. It just sounds a little uncomfortable. It’s all good me saying that in hindsight though, I am very happy with my decision of general anaesthetic.

When I came around after the procedure, my eyes were in a fair bit of pain. I had read someone say the pain was like gravel being stuck in your eyes, I can probably agree with that. Hot gravel.

Having had general anaesthetic, you need to eat something and go to the loo before you can be discharged. My Dad then picked me up and took me home .I went into my room, or cave as it was named due to the darkness inside, and more or less stayed there for 5 days. That’s probably how long it took for the pain to go from my eyes. I kept my eyes closed throughout the 5 days and took my eye drops given to me by the hospital four times a day – anti-inflammatories, anti-biotics and steroid drops. It was a bit difficult at the start to put in the drops – my eyes were sticking closed so it felt wrong/uncomfortable to open them for eye drops. It got better as the days went on. I got given an eye mask at the hospital to wear for sleeping (so you don’t rub your eyes in the night). The pain got less and less over the 5 days, until I finally started to open my eyes for extended periods of time, and then the next challenge began – adjusting to light. Having been through an operation and been closed in a dark room for 5 days, it took a while for my eyes to get used to any kind of light in the house. I built it up slowly, day by day, and bit by bit I could watch TV for longer/look at my phone more often/be in a room with lights on. 

After two weeks I was only on the steroid drops twice a day, as these were still needed for a further two weeks. I went to the hospital for a post op check and was told my eyes were OK but still recovering. I originally took two weeks off of work as I had been told I could potentially wear my contact lenses again at this point after the operation. But the hospital signed me off for another two weeks so my eyes could further recover. I don’t have glasses I can wear, so me trying to work without lenses would have definitely been a strain to say the least! Thankfully my work were very understanding about the situation.

Now and After

I have been back at work for two weeks now and more or less returned back to normal life. The contact lenses I am wearing are those fitted for me from before the operation. There are good days and bad days with them at the moment. There’s no guarantee the lenses will give you the same level of vision/ comfort as before the op  And there is no point going to get any more fitted as your eyes are still stabilising 6-9 months after cross linking. I believe this is the same for glasses wearers. So the next steps for me are to wait for the next post-op appointment in March, and then see the contact lens people in June for a contact lens fitting for my (hopefully by then) stable eyes.

I don’t think I’m currently in a position to comment on the success of the cross linking procedure – I will have to wait a while yet. It’s important to remind myself that it’s a long term benefit, no matter how impatient I’m feeling!


  • Have entertainment to hand: download all the audiobooks/podcasts you can find! Between those and the radio, there’s not much else to do when you’re in the early stages of recovery. If you have an Alexa/Google Nest type thing which has voice control, that’s a bonus!
  • Know the layout of your surroundings: you probably think you know the way around your room with your eyes closed – well recovery is the perfect time to test that theory! Make sure there aren’t any hazards in the way and that things you may need to access are in easy places.
  • Talk to people – make sure you’re still connecting with people! I was sending voice messages to friends/family over the new year. In particular it was helpful to communicate with someone I met at the West Midlands KC Group. She had had cross linking done a few years ago, so getting her insight/tips were very useful.

Read other Member Stories on our on our Blog – Here

I am a parent of a Keratoconus sufferer

So I am a parent of a Keratoconus sufferer. Since she was diagnosed at 16 I have struggled to understand what my daughter goes through on a daily basis.
I have wanted to post Brooke‘s experiences so often but it never felt right.
Now I want to tell her story and hopefully it can resonate with other sufferers.

Continue reading “I am a parent of a Keratoconus sufferer”

The Man with the Funny Shaped Eyes

A while ago I wrote this, just really to get it off my mind and keep it down to look back on in the future, but if my experiences can help just one other person feel a bit more at ease about the whole thing then even better. KC really disrupted my travel plans aha, but I didn’t really know what to expect or what was normal. So, have a read, and leave some feedback if you want  Continue reading “The Man with the Funny Shaped Eyes”

Dougie’s Story

I’m 27 and live in edinburgh and was originally told I had KC when I was 12 years old I can remember it well as I was surprised being told I had this strange condition that I’d never heard of, before being told by my optition that I had nothing to worry about. Looking back at the memory and knowing what I know now I would have called up my GP myself as a 12 year old child and demanded a referral straight to the ophthalmic department but because at the time I had excellent vision in both eyes the optition thought it best not to act so quickly and watch it progress. Because I was told not to worry it was as if i was being told not to act and so I never.  Continue reading “Dougie’s Story”

Richard’s Story

I was first diagnosed with KC around 11 years ago, but I really didn’t think that much about it at the time, and it hardly bothered me for the first few years. I used to go for regular eye tests and the opticians would always mention it, but we tend to move areas quite regularly due to work so I hardly ever saw the same optician twice so no one was really monitoring it to notice it getting progressively worse.   Continue reading “Richard’s Story”

David’s Story

My story begins in 1972 when I was 25.  I was working in a bank in London and was starting to notice that the figures in the ledgers, appeared to be double.  I had been wearing glasses for a few years and the optician referred me to Moorfields.  I explained that I was getting double vision and after a while I was sent down to the children’s department. Continue reading “David’s Story”