UK Keratoconus Self-Help and Support Association

As Lia says, if you put Intacs into the search engine of this forum, you'll find lots of posts discussing this treatment. Of course, because people tend to post on forums when they have problems, you'll probably find a bias towards negative comments, which may not be a fair reflection. For some view...

Hello Sean and welcome, I think so far everyone who has posted here about their CXL experience has had epi off (which is what the majority of hospitals offer) rather than epi on so it would be very interesting to hear how things go for you - I hope you'll share that with us next month. With epi off,...

That was a horrible experience. But like you say (and know from your previous grafts) pain isn't usually associated with transplant surgery and the level of pain you had is highly unusual. I wonder if having a DMEK, which involves replacing just the back of the cornea, means the chances of it happen...

Hi Elan and welcome,
No personal experience (CXL came too late for me) but these are the aftercare instructions produced by Moorfields https://www.moorfields.nhs.uk/sites/def ... ctions.pdf
which suggest that non-contact sports are OK.

I was at Moorfields yesterday and although social distancing in the waiting areas has gone, everyone is still wearing masks.

Hi Dimis and welcome, Crosslinking stops KC progressing so stops any further deterioration in vision, but it doesn't actually improve the vision (though a minority of people who have it done do get the bonus of a line or two more on the eye chart). Have you been referred for contact lenses to improv...

Someone else was asking about Xenia on this forum last year. https://www.keratoconus-group.org.uk/forum/viewtopic.php?f=1&t=16866&p=77022&hilit=xenia#p77022 It seems to be a very new procedure so as Graham says, I'd be cautious about it. Intacs work for some people, but also have their d...

I'm afraid a quick Google suggests that this isn't licensed in the UK. Can you talk to an optometrist about possible alternatives? Or ask your GP to refer you to a hospital eye clinic for advice?

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 thi...

Your GP should be able to refer you to Gartnavel. and if that's actually nearer where you live, there shouldn't be a problem about switching. Let us know how you get on.