UK Keratoconus Self-Help and Support Association

Hi everyone,

I don't personally suffer from KC, my Fiance does, he was diagnosed in 2004. He is actually registered on here but I really want to try and help him more than I have been able to so far.

He became noticeably depressed about his eyes in 2007 and I felt completely useless. He has mild to moderate KC but he feels they are getting worse. Obviously, I can't stand to see him depressed so we have tried to think of solutions to try and improve the situation but, unfortunately, nothing has been successful so far.

I'll tell you a bit about what we've done and then you'll know where we are at right now:

We have been to a hospital eye clinic who fitted him with Rigid Gas Permeables but he was unable to tolerate them, as his eyes felt too dry.

We then tried a different hospital when we moved and they referred him to an optician who fitted him with hard lenses with a soft outer skirt (sorry I don't know the correct terminology!) but, again, he couldn't tolerate them.

We went to the GP to try and get a referral to the Centre for Sight for Intacs but were unsuccessful.

So we then tried an optician who was on a suggested list on this website as having an interest in KC patients. He couldn't really do anything because of his intolerance to hard contacts other than suggest he tried some glasses or normal soft contacts just to try and help his vision a little.

He stopped talking about his eyes for a while, I think it was a coping strategy; trying to forget the condition is there, but now he has started mentioning it again and I think we need to try something else.

He would like to try Intacs; he's done a lot of internet research on the various treatments and this seems to be what he'd like to try the most. Could anyone please help with how we attempt to get the procedure done through the NHS? We are about to change our GP practice so want to try again to get a referral through them.

We live in Lincoln but are prepared to travel for it if necessary. I've read on someone's forum discussion that they were referred to a specialist in Leeds and got on the NHS waiting list for Intacs. Has anyone got any contact details, advice, suggestions; any help getting him NHS Intacs would be really really appreciated as I just feel we are alone with this and have been abandoned by the medical world which has so far failed him miserably.

Thank you
Cat x

Hi Cat sorry to hear about the troubles.

Can i suggest Kerasoft 3 lenses. i have not tried them myself so cant give too much practical advice. However they are soft lenses designed for KC and i understand can give good results. I have seen a number of posts on this forum where people who cant cope with RGP lenses but have had good results with these lenses.

I think that your hospital may be able to give you info, or you can find them on the web. i think they are made by Ultravision.

Another option may be to try a piggyback lens. With this you use a soft lens and in the same eye put an RGP over the top. Sometimes this can give you better comfort with RGP lenses. There are some things to make sure you keep in mind with this though relating to oxygen permeability and i dont know if its a long term solution. ask your specialist or optom.

There is always the CXL procedure (crosslinking) to try and put a stop to the progression of KC. Apparently this works well when combined with INTACS in one procedure. There are lots of threads on this forum which will give more information and again you can look it up by typing collegen crosslinking into your search engine. i'm thinking of having it done myself and am seeing my specialist next month so more info then i suspect.

I hope this gives you some ideas on options for your partner. I get depressed about my KC quite a bit but its important to try and pick out the positives and realise that you cant let it get you down!

Good luck

Hi Cat
There are some forum members who have had Intacs done on the NHS, so I hope you will get some replies from them.
And just to add a couple of other options to the list that Grifteruk has given you. There are also scleral lenses (the ones that cover the whole eye). Because they don't touch the cornea, some people who can't tolerate other lenses find these much more comfortable. So definitely worth asking about. They aren't available in all hospitals, but you should be able to get a referral to a hospital that does fit them.
And a couple of hospitals are doing trials of collagen crosslinking on the NHS (Moorfields and St Thomas' - both in London). So your fiance could try getting on one of the trials.
All the best.
Anne

Cat

Welcome to the forum!

I am not clear about why your fiance's GP did not refer him to ophthalmology. He ought to have a perfect right to see an eye specialist.

As Anne says, INTACS are widely available on the NHS, and CXL is becoming more and more available. It may be, of course, that your fiance's condition is not suitable for this sort of treatment. Only an ophthalmologist would be able to tell.

As to lenses, maybe it is too soon to give up. The range of lens types and lens materials grows all the time. RGP corneal lenses are not the only hymn in the book: there are hybrid lenses, piggy back lenses, scleral lenses, kerasoft lenses (I II and III), etc.

All the best

Andrew

The first question would be why your GP did not do a referral, even if it was to your local hospital's opthamology clinic as your partner has already been diagnosed with KC and this will be in his GP record. In my opinion your partner has the right to see a specialist about his KC as this will then tell him how advanced the KC is and what treatment options would be available.

I've said it before in previous posts,the most important consideration with either Intacs or CXL is that the procedure may not be suitable for all KC patients as there are so many different factors that need to be assessed and taken into consideration. Also whilst some people will have a very successful outcome, others may not have the success that they had hoped for or had been indicated to them pre-op; I was very fortunate in that I had a much better outcome than had been expected.

Intacs is now becoming widely available on the NHS, following the NICE guidance, and CXL is also being offered more as a NHS treatment

Personally I would push your GP to get the referral as this is the best option going forward. You do have the right to a second opinion and/or making a complaint. Hopefully your new GP wil be more supportive in the request for referral, failing that contact your local PCT.

Thank you all for your suggestions, I will show him my post and the replies and see what he'd like to do.

I think I may have been a little unclear in my first post; the first thing that we did was to visit the hospital opthamology unit and that's who gave him the RGPs. They were absolutely useless and were unable to offer us any other options or guidance and discharged him as a patient. Thinking back, I should have walked back in to tell them that that wasn't good enough but we felt they had no idea how to deal with the condition.

The second attempt we made was to see a GP and asked for a referral to the Centre for Sight, as we cannot afford to go privately. The GP didn't offer any other options either when the referral was rejected.

We realise Intacs may not be suitable for him so we may go for an initial consultation just so we know either way. Has anyone got any information for opticians who offer Kerasoft 3 or scleral lenses in the Lincoln area? The optician he has at the moment doesn't even offer scleral lenses.

Thank you again for your replies, I'm just trying to figure out what we should attempt next...the problem seems to be finding people who can supply him with what he wants to try.