UK Keratoconus Self-Help and Support Association

There has been a change to the meeting advertised on our home page. Please see the new meeting notice here
https://www.keratoconus-group.org.uk/in ... r-meeting/
All welcome, but do let us know if you're coming.

It's been such a long wait for you. If you were going for a second opinion on the NHS, you probably wouldn't get an appointment much before the end of the year. But for a private second opinion, I think you could just contact Moorfields Private directly https://www.moorfields.nhs.uk/private and hope...

Some of you may subscribe to the NKCF newsletter (The National Keratoconus Foundation, the organisation for KC in the States). There's a really good article on coping with KC in their latest newsletter https://nkcf.org/strategies-for-coping-with-kc/

Yes, still getting random 'forum unavailable' messages and slow downs. I don't know what the problem is.

I hope you don't have to wait much longer. Sometimes an operation is cancelled at short notice (for example, the scheduled patient gets a streaming cold a day or two before the op). Hospitals may then approach someone else on the list. If you're in a position to go in with just a day or two's notice...

And I'm glad it's not just me! Perhaps the webmaster is doing something behind the scenes?
Hopefully it's just a temporary blip.

Hi Cameron, That all sounds like great news. But to answer your question, before the widespread use of CXL, then 'typically', up to 1 in 5 people with KC would progress to a corneal transplant in one eye (and a much smaller number to transplants in both). CXL has really transformed things. Moorfield...

Hi Matty, I can't help on the paramedic front, but just wonder if the answer might be trying different contact lenses. Is it the standard corneal rgp lenses you have? Has piggy-backing (wearing a soft lens under the rigid one) ever been suggested for you? Or mini scleral lenses? Or even, if your eye...

We can certainly try. There are a number of aids on the market to help people with arthritis or a weak grip, but it looks as though they're for the small eye drop bottles that I'm starting to have difficulties with. I don't know if any of them are big enough for a saline bottle. https://www.moorfiel...

As things stand, I don't think there are any other options apart from surgery if a graft starts failing due to age (though who knows what scientists may come up with in the next 10 years when you look at how CXL has transformed things). I can't remember whether you had a full (PK) transplant or a pa...