UK Keratoconus Self-Help and Support Association

Hi all,

I’m new to this forum despite having been diagnosed with KC 2 years ago; on Thursday I was told it is necessary for me to have the cross linking procedure.

Has anybody had this? And if so how did you cope with the build up and the aftermath? I’m terrified and I feel like nobody will really understand/ be able to help me as I know nobody else with KC.

Thanks in advance
EF3004

Hello Elle and welcome,
Crosslinking was invented too late for me but I've spoken to lots of people who have had this done and it's very successful at stopping KC getting any worse. Hopefully some of the people with personal experience will see your post and reassure you. Meantime, have you seen this video that Moorfields made about the procedure?
https://www.youtube.com/watch?v=A-FL44G-uFU
And have a look at the crosslinking article in spring 2021 newsletter in the publications section of our homepage. https://www.keratoconus-group.org.uk/wp ... g-2021.pdf
Have you got a date for it yet?
Wishing you all the best.

Hi Elle
Our son had CXL to both eyes in November 2022 in NZ. He didn't seem too nervous beforehand but he's the type that probably would try not to show it.

I can't lie - the first 24 hours after the procedure and the local anaesthetic wore off was terrible. Try and have someone with you for the first few days to help keep on top of your pain and make sure you take your pain meds regularly and all the eye drops. Our best strategy was for him to stay in bed for much of the time either sleeping or listening to podcasts he'd organised beforehand with the curtains closed as he was really photosensitive. When he needed to leave the room he put a blanket over his head to keep the light out and looked down at the floor.
He was way better after 2 days, improved every day and by the end of the first week was feeling like his normal self but wore darkened shades over his glasses and a cap when outside to reduce light levels. His specialist was really pleased with his progress.
All the best if you're still awaiting the procedure. If you've already had it done and this post is too late to help you, maybe it can help someone else in the future.
Clare