UK Keratoconus Self-Help and Support Association

Hi guys,

Ive recently been dianosed with KC, and im looking for a bit of advice as to my options and which hospitals are well rated.

Firstly, this site is great, ive learnt a lot already reading the helpful advice posted by others, but i just have a few questions of my own.

Diagnosis- Who actually diagnoses KC? I have seen 2 opthamologists? at my local opticians who both think I have KC, due to the shape of my eye. However they have said that it is early stage, and i do have 20/20 vision with correction. I have now been referred to the NHS.

Progression - I realise that this is on a case by case basis, but i am curious as to the experiences people have of how fast or how slow KC can progress?

Hospitals - Are there any particular hospitals which are highly rated for KC treatment? In terms of area, Londson or Sheffield are my options.

Recovery - Ive been reading quite a bit about corrneal cross linking (CXL) but i was wondering what are the recovery times for this procedure? Can you see again straight away, or is it a few days/ weeks before the eye recovers?


Thanks in advance,

Matt

Hi Matt and welcome to the forum,
It is ophthalmologists (medical doctors) who can confirm a diagnosis of keratoconus. You're unlikely to have seen an ophthalmologist at your local opticians, but an optometrist - though they can be just as good at recognising KC! Are you getting 20/20 correction with glasses or with contact lenses? As you say, KC varies a lot in how it progresses. Some people only ever get it mildly and find it hardly progresses at all (though of course, we don't see many of those on this forum as they're just happily getting on with their lives!) Only around 1 in 10 of people with KC ever get to the stage of needing a corneal transplant. For a few, that can be within 3 or 4 years of diagnosis, though it's more often much longer than that (20 years or more). And of course there is now CXL which can stop progression, and much better contact lenses with a wide variety of designs to suit various corneal shapes so fewer people are likely to need transplants in future years.
As for hospitals, both Sheffield and London are well served. From all I've heard from people here, the Royal Hallamshire in Sheffield offers the full range of options on the NHS and is very good for KC. And London has the biggest eye hospital in the country (Moorfields) where they see more KC than anywhere else. London also has St Thomas's and the Western Eye Hospital which are both good for KC.
I'll leave people who have had CXL to answer your questions about that.
But if you'd like our information booklet about KC and the 2009 conference DVD which covered the various options in more detail, just e-mail your postal address to anne@keratoconus-group.org.uk and I'll send them to you.
All the best
Anne