UK Keratoconus Self-Help and Support Association

Hello all,

I've been having trouble with my eyesight, more so in my left eye than my right. Thinking I just needed glasses, I went to the optician who advised that I may have Keratoconus and glasses would be of no use to me (devastated as I had picked out some nice frames already!). A referral was made at the start of July and I've been waiting for a letter from the hospital ever since.

I must admit I knew nothing of the condition beforehand and even though I don't know if I have the condition for sure, I've been reading into it quite a bit. I'm 26 so my main concern is that, without treatments like CXL it may get worse. From what I've read, the NHS likes to wait until your eyes get so bad you require a corneal transplant rather than nipping it in the bud, so to speak.

I'm interested to know what success others have had in getting treatments like CXL or even Keraflex (this would be great) on the NHS? Did you have to fight tooth and nail for them or did you have to go elsewhere to try and find a sympathetic ear? Unfortunately, I cannot afford such treatments privately as I'm on a training course but might be able to in a few years time. However I don't want to wait a few years to get any progression halted!

Thanks

Hi Bappy and welcome to the forum,
If you've been waiting since the beginning of July for an appointment letter, it might be worth checking whether your referral has got 'lost' in the system.
As for CXL, at the moment there's very few hospitals in the UK offering this on the NHS. So it will probably depend on where you live whether you get that option. And to get CXL on the NHS, there would have to be evidence of progression. So a hospital would need to monitor your KC for at least 6 mths before they could offer that treatment.
As I'm sure you've read, KC is very variable in how much it progresses in any individual. Only about 1 in 10 people ever get to the stage of needing a corneal transplant, which is a last resort when contact lenses can no longer give good enough vision. So the majority of people with KC manage pretty well with contact lenses of some kind, and for many, progression is slow and eventually stabilises.
If you'd like our basic information booklet about KC which outlines the current options for the condition, and our 2009 conference DVD which goes into more detail, do e-mail your postal address to
anne@keratoconus-group.org.uk and I'll send them to you.
All the best
Anne

Hello Bappy, welcome to the forum. I hope you are not left waiting too much longer.

Andrew

Hi Bappy

This reminds me of my experience of trying to get a referral, read my thread on it here :

http://www.keratoconus-group.org.uk/forum/viewtopic.php?f=15&t=5105

You will need to get this sorted as it doesn't seem to go through the normal choose and book system but the clerk who sorts out your referral will either not know or understand this. As you can see from my thread above I ended up having to make a complaint through the PALS service to get my appoinment sorted out.

Good Luck and keep us posted

Gary

Hello all,

Thanks for your kind responses, I had forgotten I had posted and didn't receive any email email notifications, so it totally slipped my mind. Thanks again.

I'm still awaiting an appointment, though I did get a letter asking me if I'd had an appointment already and if I hadn't if I'd still like one, slightly disconcerting that they aren't even sure who and who should not be on their list!

I had begun to save in the hopes of having something to use for private treatment but have had to have extensive dental treatment, so I'm back to square one.

I can tell my eyesight is getting worse but it seems gradual. I don't know if it's all in my head but my eyes are uncomfortable all day long, I get tired of reading very quickly and they feel, just wrong. I try my best not to rub them, as I've read that isn't good for it but they seem to accumulate "sleep" throughout the day. Unfortunately eye drops haven't helped.

If I do have KC, man is it an annoying thing to have. I'm grateful it isn't worse but it does get me down.

Thanks for your help.