Newly diagnosed. Hospital have booked Corneal Collagen Crosslinking

[Victoire]

Completely new to this. So apologies in advance if I am asking the wrong question, or in the wrong way.

My daughter (25 years old) has been diagnosed today with KC following a referral from her optician.

The consultant described it as "early", and immediately recommended Corneal Collagen Crosslinking treatment.

There has been no suggestion of other treatments. But I can see from comments here, and on the Moorfield's website that other people are being treated using contact lenses for several years.

We have no idea whether we should be asking for a second opinion.

It's all very new and frightening at the moment.

[Anne Klepacz]

Hello Victoire and welcome,
Crosslinking is a treatment that's designed to stop keratoconus progressing and because the rate of progression varies between individuals it's not usually offered on the NHS until there is evidence from corneal mapping that there has been a deterioration over a period of 6 months. Is your daughter being offered the treatment privately or on the NHS?
Rigid contact lenses are used in keratoconus to correct the vision, but don't have any effect on the progression of KC so many consultants will offer crosslinking (CXL) in early KC both to patients who are already in contact lenses and some who are still managing in glasses. We've had a number of talks from various consultants about the current use of CXL at our meetings and these are summarised in our newsletters https://www.keratoconus-group.org.uk/in ... wsletters/
Have a look at the main articles in the Winter 2019, Winter 2018 and Spring 2015 newsletters for good overviews. And if you'd like a copy of our information booklet on KC (written for us by specialist staff at Moorfields) just e-mail your postal address to anne@keratoconus-group.org.uk
It's always scary to be diagnosed with a condition most people have never heard of so don't hesitate to ask questions here!

[Victoire]

Hi Anne. Thanks for your response. The treatment is being performed under the NHS. This was her first visit to see a consultant. I will take a look through the documents you have linked.

[tiger22]

Hi can you give us a Update on this? Also was your daughter undergoing any symptoms which pushed her eye doctor to give a referral? & was it missed by previous eye tests and found in a more recent, also did she test the thickness of her cornia which may have lead to the referral, did the eye dr say to what extent it was currently?

Thank you, please provide as much info as possible, as it could be super helpful.