UK Keratoconus Self-Help and Support Association

Just a quick 'hello' to everyone - I've been dipping into this forum for over a year but this is my first post!

I'm 27 and was diagnosed with KC over 30 months ago. I first became aware of the problem when I returned from a trip to Oz where I had damaged the right eye whilst surfing. I assumed some sand had grazed the eye and visited my local Spec Savers just to be sure. They referred me to my GP saying that there was an 'irregularity'. 6 months later the NHS Consultant diagnosed me as having KC in both eyes.

Whilst I am fully aware of the consequences of KC, my nature is not to dwell on things and to just get on with life as best I can.

Over the years, I have been fitted with roughly 4-5 different contacts for my left eye, and say 14-15 contacts for my right. As you might guess, my right eye is more developed than the left.

In all this time, the team at St James Hospital in Leeds have never been able to fit a pair of GP lenses that did not result in blood-shot eyes and the need to remove them after a couple of hours. In some cases the lenses caused more harm than good and I've had to go weeks without wearing them to allow the eyes to heal. I think the problem was compounded by having a low tear-count and mild hay fever.

During my last visit to the Hospital, the optician on duty, took back the contact lenses and told me to wear glasses. Although I was surprised and a little annoyed that I paid £100 for nothing, I was comfortable with this idea at the time since I was getting fed up with the almost monthly visits and constant problems with the contacts. The visits just seemed pointless.

I've just shelled out £250 on my first pair of specs and I have a feeling that I'll be having to frequently change the right lens since this is degrading at a more rapid rate than the left.

Now that the NHS has effectively given up on me I'm now looking at alternatives and a means to limit the impact on my wallet.

I have since found out that I can claim the cost of the eye tests from my Employer but do you know if I can also claim the full costs of the specs? They have offered but are unsure whether KC qualifies for this.

Can anyone recommend any private healthcare plans that accommodate KC?

Rich,

Hello back at you, and welcome to the forum!

Getting on with life is a pretty good strategy! I am sorry you have been having trouble getting a lens to fit well. Why did they not try lenses other than RGP’s. I got all sorts of lenses on the NHS, and the end of RGP corneals should not be the end of the story.

I’m afraid I am hopelessly thirled to the NHS, but I guess others may know about private health care plans.

All the best

Andrew

Andrew MacLean wrote:Why did they not try lenses other than RGP’s. I got all sorts of lenses on the NHS, and the end of RGP corneals should not be the end of the story.

I have been thinking that myself recently. They always explained that I had to wear rigid contacts over soft lenses and glasses, as they would not counter the distortion of the cornea. Hence why I was surprised to be told to get glasses.

Whilst I did not take notes, I do know that they went through all the different types of rigid lens available to them. I just hope/assume that they would have offered to try soft contacts if it was an option.

There are loads of different lenses, RGP corneals (also divided into sub categories like Rose K, etc). Kerasoft. Hybrid lenses. Scleral lenses. Piggy back lenses ... the list goes on and on.

If I were you, I'd go back to the contact lens clinic and ask why they did not try other options.

All the best

Andrew

Hydration and tear production have been found to be very important with KC and the ability to tolerate lenses.

Making sure you drink the recomnded 2 litres of watre per day helps and comfort eye drops of which there are many can also help.

It may well be a combination of finding a lens that is alright and then add the hydration and eye drops then makes an alright uncomfortable lens to an excellent lens that can be worn for a long time.

Hi GarethB,

Interesting points regarding water intake and drops.

It was actually after reading a posting on this forum a year or so ago, that I actively tried to reduce my alcohol intake and increase the amount of water with the idea of re-hydrating my eyes. I also mentioned the idea to my optician and he confirmed it was a good idea. Whilst I reckon I still drink an above average amount of water per day, at the time it had very little impact on the amount of time I could wear the lenses.

I also do not smoke and do not work in an air-conditioned office, two things which again I'm told affect the time you can endure the contacts.

I've tried two types of eye drops, as well as some gel-type liquid which I think was called 'Visco-tears'. I found myself having to put drops in nearly every 15 mins or so whilst wearing the lenses.

I guess its not worth taking a too negative view on the whole thing. I'm encouraged by Andrews comments regarding all the different kind of contacts. I'm just hoping that the opticians recommendation to get glasses was sincere, and wasn't just a way of resolving the long-running issue. You have to put some faith in their 'expert' opinion.

For the time being I'm hoping that when hey arrive, my new glasses will make a difference.

We all hope that your glasses make a difference, too. If the optometrist works in a hospital ask why no effort was made to fit lenses other than RGP's. If you were seeing a high street optometrist, I'd seriously think of changing my optician.

Andrew

Rich,

It is possible to drink an above average amount of water and still be dehydrated.

Things like air con you mention do not help, alcohol, caffeine, chocolate etc all act as diaretics so can undo the benefits of drinking water!

Since cutting most of the bad things down to low levels, hydration is so much easier, even in the recent extreme heat we have experienced.

Regarding eye drops, I was a bit like you about 15 - 30 minutes, but I found I had to go through this for about 2 weeks before getting any benefit even from the eye drops that had the least effect.

Then when I tried Systane, I still had a 2 week period for the effects to start kicking in so I noticed a difference. 8 months down the line (except when it was really hot) I was on the drops twice a day. The wort in the hot weather was 4 times per day and I had been wearing the lenses for a long time each day too.

We often assume things are having no benefit because we do not have a benefit within a few days. This is where I have found KC to be unique, not only do getting used to lenses take longer than normal eyes, but so do the benefits of the other types of treatment.

We'll, I've just collected my new glasses from Boots and I'm (trying) to type this reply whilst wearing them.

Initial impressions are that the vision is improved considerably in my left eye and they have also made a noticeable improvement with the contrast and clarity of the vision in my right. Its not perfect but certainly a step in the right direction.

One thing I'm not sure about is the affect of the glasses on my near/close vision. For example, when I look at this laptop screen with my glasses on, the screen turns from a perfect square, to a tapered, distorted rectangle. They seem to exaggerate the depth-of-field, causing everything to warp and stretch vertically. Plus, any slight movement of my head is causing the vision to switch dramatically from left-to-right. Its a bit tricky to explain but I hope that makes sense.

I'm a web designer by trade so being able to distinguish between straight and curved lines is a bit of a basic necessity.

Is this to be expected with early wearing of glasses? I've only ever worn contacts so not sure what to expect.

I am told that it depends on age.

when I was 36 I went with my contact lenses in to an optician and told him that I was having trouble with the telephone directory. he said "you need reading glasses". I said "I don't, because I wear contact lenses." he said "Yes you do need reading glasses to be worn over your lenses. what do you expect at your age?"

I said "a bit of civility from shopkeepers, thank you very much."

I bought the reading glasses. he was right. I did need them.

Andrew