UK Keratoconus Self-Help and Support Association

Ok I was diagnosed with KC about 6 months ago but only today did i start wearing lenses for the first time in my life. I'm 28. The KC isnt as bad in my left eye as it is in my right eye. I never really took much notice of my eye condition until a year or so ago but I knew it wasnt as good as it used to be as everything appears more blurred at a distance.
I can still read and see pretty well without glasses but after a certain distance things seem a lot more blurred than they should be.
The opticians gave me specs and not contact lenses simply because my left eye only had mild form of KC which the lenses have fixed and I can see much more clearly wearing them. The lenses don't seem to do anything for my right eye whether I have them on or not there is absolutely no difference because its worse in this eye and probably needs contacts to correct my vision? They were aware of this but because its my first time wearing anything on my eye they started off with a less stronger lens even though it does work well with my left eye.
The doctor said it will most likely get worse as I get older and probably move me to contacts eventually. Certainly if both eyes were the same as my right eye then i would definately have needed contacts and not specs.
I'm worried about the whole thing as it seems its only 1 in 3000 people who get this and I guess im the chosen one! The cost is another issue as I will have to keep going to the opticians for regular contacts and lenses and renewals etc.
I was worried at first it might be because of too much tv or something like that. I use VDU's a lot but they said it was more to do with hereditary or other things. None of my family suffer from it as far as I'm aware. I have mild eczema which they said can lead to KC or rubbing of eyes etc.

Hi Joe,

Welcome to the forum.

Firstly KC can satbilise as quick as it starts. Mine ahs been stable for nearly 3 years now.

At the moment the current thinking is KC is hereditory, but to the extent we are predisposed to the condition which means we may not get it,even if you have the genes. Secondly inheriting KC is not as simple as eye colour, recdent studies have shown that at least four recessive genes need to occur together for us to get KC which is why no one else in your familly have shown signs.

If you are being treated through the NHS your lenses will be subsidised at £90 per pair. Having not needed frequent lens changes not sure if you have to pay this every time you get a new set or once per year if you need lens changes each year. Others will comment further.

I do know that if the hospital orders lenses for you and when fitted they appear not work so you never leave the hospital with them, you do not pay for them. They order a new set and try again as fitting is hard and often takes a fewe visits.

Regarding using VDU's, the HSE guidlines are to take little breaks frequently. In their VDU information they recomend 30 minute stints at the pc with short breaks of a couple of minutes, so collecting something from the printer, taking post out or something.

I find drinking 2 litres of water per day instead of coffee, tea, fruit drinks and fizzy drinks helps a lot with eye comfort and VDU use.

Sit as far away from the air con as you can which also irritates the eyes when using lenses.

Hope this helps.

Joe Bloggs

Welcome to the forum.

Why are you having to pay commercial prices for your lenses?

If you are in the UK, you are entitled to get contact lenses at a knock down price (it used to be £45). Your lenses are not prescribed for vanity but as the management of a sight threatening condition.

As to actual cause, I think you can discount the influence of vdu, tv etc. I have always though of eye rubbing as a symptom of the condition rather than a cause, although we do sometimes rub our eyes so vigorously as to leave them traumatized.

Anyway, it is good to welcome you!

all the best

Andrew

Joe - if you get to the stage of needing contact lenses, then as Gareth and Andrew have said, KC entitles you to contact at NHS rates (currently around £48 per lens) which covers any changes in fitting or prescription for 12 mths. To get the NHS rate, your lenses would have to be prescribed through a hospital eye department which will either provide the lenses or refer you to an optometrist to get them made up. But it sounds from what you say that you're getting good enough vision with glasses at the moment. And each case of KC is different, so you may find yours doesn't change very much and you can stay in glasses for quite a while. Good luck!
Anne

I was referred to the NHS after my first eye exam at the opticians - then after was told to come back to NSH 6 months later to see if the condition had got worse. It hadn't but they referred me back to the opticians to get my glasses, which I did last week. The lens were about £100 so I'm not sure if the NHS intervened for the price or not.

My lenses through my Hospital eye unit are £98 so quite possibly you are getting the NHS rate.

Some eye units contract out the contact lens side of things to nearby opticians.

Isn't there an additional bit of business where if you need your lenses replaced in a short time, you get the next ones free? I am pretty sure that under some circumstances I used to get my lenses without paying, but I may be wrong about this.

Andrew

I used Vision Express for my lenses and they said if i break or damage mine in the next two years they'll replace them free of charge.

I think there is some confusion here? Joe has said that he is wearing spectacles and not contacts, hence no subsidy form the NHS. Its just he is calling his specs lenses...

At least I think thats what he means!