Advixe

[Libby]

Hi everyone

just a few words of advice needed from someone who is emotionally not connected to me.

my daughter was diagnosed about 4 years ago with KC in her right eye (I have I it bilateral since approx 1980).
At the time I was devastated because I felt so responsible for passing it on. At the time of diagnosis I had been reading about the cxl and was desperate for her to consider it - because she was frightened she completely dismissed if and tbh the private consultant we saw at her diagnosis was very negative about it as well - saying it was a new treatment and they didn't know any long term effects.

A couple of years ago she tried rgps but didn't persevere with them.

Fast forward two years and she decides she really can't see anything thro the right eye and needs to try with lenses again. We have been today and we are both stunned - apparently her KC is very advanced and with rgps they were struggling to get her to see the 2nd line.

We now have an appt to see a consultant in December to talk about transplant.

I really don't know what to advise her - the contact lens lady was lovely and said she could do nothin as she had been managing for the last two years with nothing in the eye and the eye being effectively useless. It's so hard to know what to do - I'm so scared that the KC will come into her left eye - when I mentioned this the contact lens lady said if there is any change in the left that she should have cxl immediately.

just wondered what peoples experiences of corneal transplant was like - was it successful, did our sight improve dramatically, do you still need t wear lenses afterwards etc.

any advice would be greatly appreciated

Many thanks

Libby

[Andrew MacLean]

I have only positive feelings about my grafts. I wear glasses now and a lens on one eye. With this mix I can drive