UK Keratoconus Self-Help and Support Association

Hi. I am new here so i'll start with an intro.

My name is Sam, I am 20. I was told i had KC last december, but spent 2 years prior to that being told i had astigmatism. (My opician never believed me when i kept telling him my eyes were getting worse so i got a new one.)

I have had 2 new prescriptions in the past year, and i think i am due for another one soon, my eyes just seem to be fine for about 4 months after new glasses, then suddenly decline rapidly over two weeks. (No idea if that is normal.)

Okay, well i have a few questions, if anyone has a spare few minutes to answer i would be eternally gratefull.

1, Is KC a very expensive disease to have? I am on low income so it would be an absolute nightmare if it is. If so, do you have to have treatment? Would it make any difference if i didn't have contacts?

2, I am getting pain in my eyes, I can't describe the pain, but it is relieved if i apply slight pressure to my eyes with my palms. It can be unbearable at times, but it only started about a week ago. Is that normal with KC?

Any help would be great
sam.

Sam,

(My opician never believed me when i kept telling him my eyes were getting worse so i got a new one.)

Did you get a new eye or a new optician?

Sorry about that, just had to get that off my chest.

I certainly experienced a period of rapid deterioration and rapidly changing prescriptions prior to and after diagnosis. This is normal and can continue or stop or slow down; its very unpredictable but I think entirely normal.

The cost of KC. We have discussed this previously and you may be able to find the thread, I will try too when I have finished typing. It costs £50 per lens once you get referred to an NHS clinic. On top of this there is the cost of solutions which is variable, I think I spend about £50 for 3 months worth.
It was cheaper if I remember rightly once I switched to lenses because the cost of changing glasses every 5 minutes was worse. Once I got my first pair of lenses, I wasn't charged for powering up new lenses or even trying new types so it worked out cheaper.

Whether or not you can do without lenses will depend on your uncorrected vision. I think to some extent one has to learn to cope during periods when you cannot wear lenses, at night and so on. But I found the lenses a help even though I couldn't wear them for long periods. I don't think you will find more expensive than glasses however.
The pain in the eyes could be due to the strain of not having your vision corrected properly. You are probably squinting a lot which will give you a fair amount of pain. Not sure about applying pressure specifically, but it is the most accessible form of pain relief when you think about it; you are substituting one kind of sensation for another.

I don't think anything you have described is anything you need to worry about. Having KC is not pleasant but hopefully you can be reassured that it can be managed.

indeed

Welcome to the forum and thank you for the introduction!

1, Is KC a very expensive disease to have? I am on low income so it would be an absolute nightmare if it is. If so, do you have to have treatment? Would it make any difference if i didn't have contacts?

Not really: it can be expensive, but it can also be managed at low cost. I think that the National Health pays the bulk of the cost of lenses and the patient pays only £50 per year per lens. If your prescription changes in the year the next lens is dispenses free (I know that there is some variation between the different jurisdictions in the UK and I hae no doubt that others will correct me if I am wrong).

2, I am getting pain in my eyes, I can't describe the pain, but it is relieved if i apply slight pressure to my eyes with my palms. It can be unbearable at times, but it only started about a week ago. Is that normal with KC?

Yes, but go to the ophthalmology clinic to have it checked. It may be that your condition is progressing and needs some new theraputic intervention.

All the best.

Andrew

Did you get a new eye or a new optician? [/Quote]

If only it was the first hehe.

Thanks for the feedback guys

Sam.