UK Keratoconus Self-Help and Support Association

Hi After a visit to see the surgeon yesterday, turns out that since I'd finished taking the 4 week course of drops that I've stared to react to the stitches. This has a caused a cheese-wise effect on 3 of the 10 stitches. Dr thinks this is what has caused the light sensitivity (I really thought it w...

Hi I discovered that my vision was deteriorating fairly rapidly, over a period of 2 years. After seeking advice and doing a bit of research, I had crosslinking in both eyes (right in June and left in July) and more recently (end of August) a wedge resection with auto lamellar keratoplasty. Since the...

Hi That's good. You've every right to be concerned – it's your sight (and it's not cheap) and it's a big deal. Glad you've been given some reassurance and are feeling more positive about things. I do wish more realistic advice would be given about going back to work though – as you know I was told '...

Hi I've had CXL in both eyes, but not INTACS. I'd go by what you've been told by the private consultant. This has topic has been posted before fairly recently, but I thought the advice that was given was to keep wearing them, on the grounds that lenses can help maintain a more normal shape which is ...

Hi My understanding is that C3R can halt progression of KC in patient's whose condition is progressive (though there is a cut off point). C3R causes the formation of normal chemical links between the collagen protein strands in the cornea. This makes the cornea more rigid and can stop the keratoconu...

Makes the point that in many jurisdictions this treatment is still considered 'experimental' and its results 'speculative'. Hi Certainly a valid point, and people should be cautious. However, it was developed in Germany in 1993 with the first patients treated in 1998. Hundreds of patients have been...

Hi In the past I trialled 32 pairs of lens (hard, soft, toric, etc) and became intolerant to them. During that time I ended up with scratches on my cornea because they will ill-fitting. At times, they hurt as well. I'm no expert, but I think there's potential to cause damage (that happened in my cas...

Hi Sorry to hear about the scratch. I think it's always unsettling when things don't go smoothly, and your're absolutely right, the prospect of vision failing can be frightening. I think if there had been anything to worry about, Dr D would have flagged it up (he's demonstrated with me that he's a r...

Hi I guess your consultant is playing it safe. The condition can be progressive, but it can also stop, and so if you're stable or the condition has stopped, then there's no need for CXL (it can be fairly expensive and it's no walk in the park). On the other hand, if after a period of time it is clea...

Hi 1! Had the procedure done on Wednesday at the Centre for Sight, and have lived to tell the tale! Dr Daya was like a child in a sweetie shop – apparently Pellucid Marginal Degeneration is uncommon and very few people have had an ALK. Anyhow, I must admit to recollecting very little about the actua...