UK Keratoconus Self-Help and Support Association

I've been following this forum closely since my teenage daughter was diagnosed with keratoconus earlier this year. Could I thank the moderators and volunteers who keep it going. It is both very useful and a solace to those of us who get hit by this disease from out of the blue.

Scrolling through, there seem to be many people who ask about cross-linking outcomes and experiences. My daughter is due to have one eye done this month and the other later in the year. I've done considerable reading around the topic and also grilled our consultant about it. On balance I'm hopeful, though I try to bear in mind the risks and possible disappointment.

What makes me uneasy are the slightly divergent messages coming from the research and that which comes from Moorfields. The research I've seen so far is very positive, with very high rates of stabilization for long periods and very low incidence of adverse effects. The professionals at Moorfields seem more cautious, emphasizing the uncertainty of long term effects and suggesting higher failure rates and adverse effects than published research shows. It could be that they've got access to more recent data that hasn't been published or because they are more cautious in offering a prognosis to patients, especially young ones.

I was wondering if there might be scope to do a survey on the forum of people who have had cross-linking, to compile their experiences and outcomes. As far as I can tell, this would be no more anecdotal than some of the retrospective studies that have been published in medical journals. Clearly doing it on a forum like this is likely to generate more responses from people who have had problems and continue to have problems (and therefore continue to use the forum as a resource) than people for whom it's been a big success, have stabilized vision and no longer have keratoconus at the forefront of their minds. But this too is useful to balance some of what seems like hype on the Internet.

I suppose I'm asking whether there might be scope for a sticky on the subject of cross-linking.

In any event, I'll post my daughter's experience and results as they happen.

Welcome to the forum.

A note of caution is required when reading research results: the more cautious appraisal of the Moorfields people is sensible.

That said, in your daughter's position I think that most of us would be happy to consider cross linking.

Andrew

Hi Mark,

My son is due to have Deep Anterior Lamellar Keratoplasty (DALK) carried out next week some people at the hospital are
calling this procedure cross linking and some give it the name above, we too have been advised of the risks and we are
hoping that all is going to go OK for him as he is only 18 and has the rest of life ahead of him.

I had never heard of this condition before he had it diagnosed and like you have tried to read up on it and it is minefield.

Hope all goes OK for your daughter,

Mary

Hi Mary and welcome,
I'm puzzled by your post. A DALK is a partial thickness corneal transplant - a very different procedure to collagen crosslinking which is designed to stop the progression of keratoconus. A DALK is usually only suggested if the KC is very advanced and contact lenses no longer correct the vision, whereas crosslinking is done at a much earlier stage and involves using riboflavin drops and UV light to strengthen the cornea. If you'd like our information booklet about KC, do e-mail me your postal address and I'll send you one anne@keratoconus-group.org.uk
And welcome to Mark - again, do contact me if you'd like our booklet. Our last newsletter, which I can also send you, had a summary of an interesting talk by the Corneal Fellow at Moorfields at our last London meeting which covered crosslinking. And we'd certainly be very happy if you'd post your daughter's experience. As you've noticed, plenty of people ask questions about crosslinking on this forum, but very few come back after the procedure to tell us how it worked for them. That perhaps suggests that the majority were happy with the outcome and they don't need the forum any more! So I'm afraid, attractive as the idea of a survey sounds, we'd mainly get replies from the people who didn't have a good experience. And of course, there aren't any long term results because crosslinking simply hasn't been around long enough - I don't think anyone on the forum had the procedure done more than 6 or 7 years ago and most are much more recent.
All the very best to son and daughter!
Anne