UK Keratoconus Self-Help and Support Association

Hi Andrew, Yes, I am aware about the cornea thickness. I'm not sure if she will even be able to be treated as she will probably need to be sedated or given a GA just to get any measurements done. As I have said earlier, my biggest fear is that she suffers from hydrops in her right eye, effectively m...

HI Lars, Thanks for your insights. I guess the best we are hoping for with my daughter is to stabilize her right eye. They may not be able to treat her left eye since it has suffered from hydrops. I'll take a look at the article you recommend. We have managed to get Jennifer to wear dark glasses so ...

I'm considering crosslinking treatment for my disabled daughter since she has no other treatment options available to her due to the severity of her disability. I wonder if there is anyone out there who has had it done? I really need to know what it feels like immediately post op, how long it was pa...

Jennifer's house manager is on the ball. She is going to contact the NZ Foundation for the Blind to see if they can provide support. I guess we'll need to try and assess Jennifer's vision before they'll register her. I'm not sure how we will do that since she can't read, speak or co-operate with dia...

Got the meds sorted out today - the hospital and the home faxed me the Dr reports and they were the same AND agreed with what I had heard at the hospital - thank goodness. The manager of Jennifer's home has now got the correct meds schedule so things should be fine now. It just shows how careful you...

Great to hear that Charlotte is making good progress with her lenses. You must be really proud of her. I know when I started wearing normal contact lenses for short sight I used to get really stressed at the thought of having to put them in and then having to take them out at night! Loved the photo ...

We had good night with Jennifer - I only had to get up to her once which is not usual. She also woke happy for the first time in ages - not so happy when the hypertonic saline went in though. She's getting a lot better with her drops / ointment though as I'm sure they make her eyes feel better. She'...

Well, it's been 5 weeks since Jennifer was diagnosed with KC after suffering from hydrops in her left eye. Those weeks have been pretty awful for her - pain etc and us worrying about what is going to happen to her. I saw her today at her hospital check up and I can't get over the improvement since I...

Hi Ali We have a check up at the eye clinic tomorrow (Friday in New Zealand) so here I am in the office researching my questions and making a list. I'll add your idea to it. Yes, inserting a lens would be a mission - probably sedation and restraints would be needed so probably not an option. Her eye...

Thanks for your comments, Ali. She must be suffering from photohobia as she keeps her eyes shut most of the time - even before the hydrops occurred. She is better when wearing her dark glasses (a relatively new thing as before hydrops she wouldn't even keep them on for a few seconds) and when I clos...