UK Keratoconus Self-Help and Support Association

Hi guys,

I recently joined this forum after wanting to but forgetting to numerous times. I am a university student and was diagnosed with keratconus when I was 16/17. Since then and now vision has deteroted adn I have noticed that. However I'm on the NHS atthe moment and firstly was given the Kerasoft3 lenses which were hell as they would not work and would be difficult to manage on a daily routine. I reluctantly didnt wear those and this carried on for almost 2 years. However last i had a new doctor/contact lens specialist who suggested giving me hard lenses that obviouslt hurt alot but at this point I was desperate to have clear vision. However just last week I had a checkup and am now waiting on my hard lenses but I asked my doctor about the progression of my keratoconus. She has said that it has progressed and possibly suggested cross linking (which I have researched on but have always put off due to money issues as well as not understanding it fully) She didnt really explain anything to me and just suggested maybe going private for that or even NHS.

Now I have no idea hwo to approach this as I just want clear vision and I understand that CXL will stop it progressing and maybe there may be other solutions. I have looked at Moorfields but I have no idea if I;m suppose to be referred or just enquire myself. Or whether i should enquire privately. I hope someone can help me, really feel stuck and am struggling at the moment with this condition.

Avneet

Hi Avneet and welcome to the forum,
Hopefully the hard lenses will improve your vision considerably - though it will probably take a couple of weeks to build up wear time and adjust to them. If your hospital doesn't offer CXL on the NHS (and not many hospitals do at the moment) then they should be able to refer you to one that can - which could be Moorfields. Liverpool, Sheffield or one or two others. Or you could ask your GP to refer you to one of those hospitals for a second opinion. As you say, CXL is designed to stop further progression, though in some cases people do also get a small improvement in vision.
If you e-mail your postal address to anne@keratoconus-group.org.uk I can send you our information booklet about KC and some other info which will give you a better understanding of the options there are.
All the best
Anne