UK Keratoconus Self-Help and Support Association

Hi Cassandra, I just wanted to write a quick note to agree with everything Anne wrote, and to reassure you that Brooke is not alone. It sounds like you're in the right place now; and I share your frustrations that this was not identified sooner. As Anne said, most people with KC don't eventually nee...

I had a re-graft 4 weeks ago, and I agree that sneezing (and coughing to a lesser extent) caused pain. But that pain has reduced considerably and is barely noticeable now.

If your pain continues, I'd strongly suggest going back to your consultant, as things may need to be looked at.

I agree with RedOnion. I generally found the visits with OH when I was at my worst to be very helpful; the best thing they did for me was to note that the DDA (Disability Discrimination Act) applied to me. At that point, your legal protection against being "got rid of" improves, and your e...

Hi Malluc, and welcome to the forum! You might need a better fitting lens, but try taking the lens out, cleaning it if it looks to be full of gunk, refilling with saline and re-inserting. I find that over time (and only sometimes), my lens gradually loses the saline. Because scleral lenses are reall...

I agree with the comments above - up to a point. I think the issue here is one which could smack of ageism. 1. The RNIB film is going to be aimed at a younger audience, I understand. 2. The younger audience with progressive KC are more likely to be able get CXL than those of us with a few years unde...

Really glad that you've progressed. Do keep us informed on how you get on with the replacement lenses when they arrive.

The newsletters have been "opt-out" for some time, but only 3 people opted out if I remember correctly. I agree with you though in principle but: * Many studies have shown that charities gain far more traction from a paper newsletter than from an email which probably won't get looked at. *...

Hi. I can confirm that the recent newsletters are now online on the new website, which will be launching to everyone soon. We're not spending the time at the moment having to keep two sites up-to-date. In the meantime, if you send us your postal address, we can add you to the mailing list so you'll ...

I've been wearing sclerals on-and-off for about 15 years now. Currently I wear one in my right eye for about 14 hours a day, but the left one only for about 8 hours. That is gradually improving though. I've had the left lens for about 2 months.I insert the right lens correctly first time almost all ...

Hi Heather, One option which may be worth considering is "Access to Work". I understand that under some circumstances, they may provide a companion to assist you on your commute. I agree with the suggestions above though - talk to your HR and occupational health, get them to confirm that y...