UK Keratoconus Self-Help and Support Association

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!)

Getting used to rigid lenses does take a while, but it shouldn't be this painful. What was it like when you were being fitted for them? Did you experience a lot of pain then? If not, then maybe the lenses weren't made up exactly as specified in the prescription. Mistakes can happen. And how much dif...

Hi Chris and welcome, Have a look at page 10 of our Spring 22 newsletter https://www.keratoconus-group.org.uk/index.php/newsletters/ where we raised exactly this problem. Since another company took over the manufacture from Innovative Sclerals, it looks like they altered the material used. We've had...

Hello Jayne and welcome, I think in theory it's OK to fly a couple of weeks later. But I think the last time I was getting travel insurance and said I'd had grafts, I was asked it that was more than 6 weeks before. And, in practice, you're likely to have quite a few follow up hospital appointments i...

I don't know how many of you have noticed this item on our home page https://www.keratoconus-group.org.uk/index.php/2022/05/27/test-post/ Decisions on funding for research into eye conditions are now decided not just by what researchers think might be interesting, but by what patients think is impor...

As Lia says, if you put Intacs into the search engine of this forum, you'll find lots of posts discussing this treatment. Of course, because people tend to post on forums when they have problems, you'll probably find a bias towards negative comments, which may not be a fair reflection. For some view...

Hello Sean and welcome, I think so far everyone who has posted here about their CXL experience has had epi off (which is what the majority of hospitals offer) rather than epi on so it would be very interesting to hear how things go for you - I hope you'll share that with us next month. With epi off,...

That was a horrible experience. But like you say (and know from your previous grafts) pain isn't usually associated with transplant surgery and the level of pain you had is highly unusual. I wonder if having a DMEK, which involves replacing just the back of the cornea, means the chances of it happen...

Hi Elan and welcome,
No personal experience (CXL came too late for me) but these are the aftercare instructions produced by Moorfields https://www.moorfields.nhs.uk/sites/def ... ctions.pdf
which suggest that non-contact sports are OK.