UK Keratoconus Self-Help and Support Association

I do hope it's good news when you're seen this week and you don't need any more interventions. It's been such a tough time for you. All fingers crossed.

So glad today went well. It's amazing what a difference good communication makes! Wishing you all the very best for the rebubbling next week.

I don't know who spoke to you at RNIB, but ECLOs aren't in 'an area' - they work in hospitals and Moorfields has several. There's usually someone at the Information Hub just by the main entrance to the clinics on the right hand side (not the A&E entrance) or if that's not manned, then there's an...

Have you tried talking to the ECLO at Moorfields as to whether anything else is available? I know some hospitals used to have volunteer drivers and also some councils. Not sure if these schemes exist any more but worth asking.

I gave up driving a few years ago now, so didn't reply to this on the forum. But looking at the gov.uk website about driving licence requirements, I was very surprised to see there is now a huge list of eye conditions that have to be notified to DVLA and that includes keratoconus. I don't know when ...

As I said to you off the forum, the only time I've experienced pain like this was when I had what turned out to be a snapped stitch which was obviously scratching my eye and my eyelid. I was in agony until I could get to A&E to have it removed. I don't know anything about DMEK grafts, but presum...

I've used a variety of eye patches - most chemists stock them. The most widely available is a black 'pirate's) patch but I've also got one made of thin plastic (not see through). There's probably more choice online. I remember being very light sensitive post graft for several weeks, but it should se...

Hello purpletopaz and welcome! East Grinstead has a very good reputation for KC, so your son will be in good hands. And you shouldn't have a problem getting on the NHS track if your GP refers you. But it'll be good to know more about your son's diagnosis before college starts. Have you found the lea...

Our 10th one day conference is less than 2 months away! You'll find the programme and details of how to book for the 'in person' event or for the live stream here https://www.keratoconus-group.org.uk/index.php/kc-group-tenth-conference/ Covid put paid to our planned 2020 event, so this is the first ...

Hi Clare,
Quite a few of our members have continued with their previous hospital after moving. So I don't think there's anything to stop your son staying with his current hospital if he doesn't mind the travelling (and you might get to see him more often too!)