UK Keratoconus Self-Help and Support Association

Hi everyone

First of all I'd like to say that this is a really really great forum, even though looking at it for so long has given me a slight headache. Well done everybody!

But anyway, i think i need some advice.

I was diagnosed with KC about two years ago. Now as with the majority of hospitals my consultant didnt really tell me much about what i should do. So off i went to my local specsavers to get my eyes fixed. Glases werent really an option becasue they didnt correct my vision and they made things look a bit slanty. So i was fitted with a lovely shiny pair of RGB's. In terms of vision these little bits of perpex were splendid but in terms of comfort, well...
I could wear them for about 4 hours and then my eyes would start to get really tired and dry. This irritation made me want to rub my eyes but often resulted in me losing the contact lenses round the back of my eyeballs and scouring the carpet for the next two hours because i thought they'd fallen out.
So after about a month of wearing them all day for about three days a week for around a month i got really anoyed and one day i took them out, wrapped them in a Greggs the baker tissue and popped then in my wallet where they lived for about three months. I found them cracked when i took them out and since then i havent worn contacts or glasses and decided that if i couldnt see it its not worth seeing.
Recently, and mainly due to the constant nagging from girlfriend and random people thinking i'm giving them dirty looks i've decided to try and fix things again. This is were it gets all confusing.
I was wondering if i could get more comfortable RGB's that might let in more oxygen or were made so i could wear them for longer periods of time?
Or should i get KC lenses? my optician said they cost about £450 and they were so comfortable i could even sleep in them (but she didnt advise it)! Is this cheap? they look scary.
I'm only 22 and i stay up late and i go out on the razzle probably a little too often so i need something that i can wear for about 16 hours of the day. I'm also pretty tight so i'd like to keep costs down.
What do you all think i should do? I could really do with some sound advise here..

Regards
H.McFaddon.

H

Welcome to the forum!

Lenses for KC has advanced alot in the past 5 years! I would like to think that youc ould be fitted with lenses! However! Its impossible to say how good any lens would be without knowing the level of KC that you have!

ave you managed to get a Eye Unit / Hospital referral?....

What can you see without the lenses? and whjat could you see with?

There are sooo many lens designs out now that many KC patients who couldnt be fitted before have now been fitted!!

Jay

btw do you mean RGP (rigid glass permeables) as opposed to RGB (red green blue) lol.

ha ha! yes. rgp!

my eyesite isnt too bad. i have a few probems with small print, a lot of problems with seeing things at distance. not good enough to drive in.
but my old rgp's gave me really good vision. they were just so uncomfortable... i'm not sure my KC is all that bad either. i could be wrong though. i got diagnosed at a rivate hospital in birmingham but as i dont get free bupa through work anymore i've knocked that on the head.

Go to your GP and demand a referall to a proper eye clinic,specsavers know nothing about KC and arent the people to help you,KC is a serious eye disease that is not to be taken lightly in any way,it can start off very slight but within a short amount of time can degenerate,if untreated,into a very debilitating condition,if you choose to just deny to yourself the seriousness of your situation then there's no way you will get to grips with it should it escalate to an acute state.

There are many options available,i wear soft lenses and have no comfort issues even when wearing them on the p*ss in town all day,to the football with the lads and then out on the town again at night,but they do get dry,easily fixed with some drops applied in the toilet away from an audience,the lenses did take me some time to get used to in an after care sense but now i am clued up on cleaning etc they are o problem at all.

No offence meant by my blunt manner mate and you have come to the right place for advice form all sorts of people,but get a referall to an expert or you WILL regret it in a big way.

Hi

Welcome to the forum - glad you found us.

I would try contacts again. I understand why you gave up - there were days when I thought I would - there still are but they're less common now. I would say it took me about a year to get used to mine. At first it was the discomfort and just the general rigmarole of getting them in and out which I thought I would never cope with. Now I pop them in and out with very little effort at all (except when I am in a hurry and they will not co-operate). This means that somedays, when things are bad, I literally only wear them as I need to (such as for driving) then I take them out, and put them back in later. It is still a bit of a bugger to remember all the things I have to carry around with me - but it is a small price, well worth paying.

Sunglasses help me tremendiously with the level of discomfort, even when the sun is not that strong.

Brigid

Hi there...

Yes there is a whole world of options waiting for you out there...

Differing designs of RGP's with materials which can give you more comfort and increeased oxygen transmission, soft lenses, piggybacking (an RGP on top of a soft lens)etc etc... you just have to find a practitioner that can offer you a wide range of optoins.

However, "just" is a big word and finding someone who is both sympathetic to your needs and also clinically used to dealing with KC can be a bit of a problem. You don't say where you are so its difficult to advise and I am presuming if you didn't get much advice off your hospital consultant that they don't have a contact lens clinic?

Lynn

horses mcfaddon

Welcome to the forum.

Everybody else has said it well. I was fortunate to live in an area served by an excellent hospital contact lens department where the optometrists were very experienced at fitting KC eyes. I found to my dismay that this is not the experience in every part of the country.

But even where KC people have to go to the High Street, there is every possibility of finding someone who knows how to fit ketaroconics with lenses, and what different lenses are available. Some people have to look a bit to find the right shop.

I didn't venture an answer to your poll. I wear sunglasses a lot, but its up to you. If you think you ought to wear sunglasses more often, then I think you should wear them too!

All the best

Andrew

The other thing is, if your prescription is considerd complicated (compared to non KC people) which probably most KCers are then our lenses are subsidised on the NHS at about £50 per lens.

And if you're in or near Birmingham, then the Birmingham Eye Centre (Dudley Road) has a very good contact lens department so I'd agree with Samba's suggestion of asking your GP to refer you there.
Anne