UK Keratoconus Self-Help and Support Association

Thanks Eddie - I checked the NICE website a couple of days ago, when it was still saying the guidelines would be issued in the autumn, so it's good they're now out. And thanks to all the forum members who took part in the consultation - it's good to know that NICE do take account of patients' views!...

Helen - all the very best for a good result in the second eye. Just for the record, NICE guidance on Intacs should be out in 'autumn 2007' according to their website. And there are already hospitals offering Intacs on the NHS as some of our members can testify. So the wait may not be so long for Int...

I too had various problems along the way with my grafts, so it was far from OK for a few years, but like Vic and others, I don't regret having them. I don't remember being told anything about risks at the time, but that might be because I chose not to 'hear' - I was so desparate for something to be ...

John - I think the lower graft survival rate quoted here may be because it's looking at transplants done for all sorts of reasons, not just KC, whereas the figures we've had before are just looking at KC grafts. In other words, survival rates are better when the reason for the graft is KC rather tha...

Welcome Ianto!
Several of our members go to the eye clinic at Hull where there's a good contact lens department. So as Gareth says, if you get your GP to refer you there, you'll hopefully get things sorted out.
Anne

Marc - John Dart gave us lots of useful figures in the talk he gave on surgery in KC at the 2005 conference. If I haven't already sent you the DVD of that conference, do let me know and I'll put one in the post to you. It's available free to all our mailing list members.
Anne

Hi Russ Did I send you the DVD of the 2005 conference when you joined? If not, let me know and I'll put one in the post to you. It includes a talk from Mr Dart, consultant at Moorfields, on when to offer surgery and he talked about hydrops then. He told us that in a very few cases, a graft would be ...

Many thanks Lynn! And all the best to Petra in setting up a KC Group in Trinidad. Now there's a venue for our next conference - guaranteed sunshine!
Anne

There is a new website and telephone service created by SeeAbility and RNIB which covers eye care and vision for people with learning disabilities, including information on keratoconus. The website is at http://www.lookupinfo.org
telephone is 0800 121 8900
Anne

Hello Kaz and welcome to the forum. I'm sorry you are one of the small minority of people with KC who find it progresses rapidly. As I'm sure you've discovered, KC is very varied and unpredictable - for many it does stay mild and doesn't ever get to the stage of having an impact on their lives. Unfo...