UK Keratoconus Self-Help and Support Association

Hi all, I am new to this site but not new to KC. I am 28 and was diagnosed about 5 years ago.

So far I have always managed on Gas Permeable contacts. For the first time recently a lens dropped out just from me blinking. I am worried that this means my condition is worsening. Even with a lens in the vision in my left eye isn't as good as the right. With both contacts in I can read the bottom line of the snellen chart (providing I'm not tired). My eyes have always been very intolerbale to light, I wear sunglasses on couldy days!

I see my eye specialist (NHS) every year and he never comments on what stage my KC is at so I have no idea if my condition is mild or severe.

I also have been told conflicting info about cleaning/storage. My specialst said I only need to use the daily cleaner about 2-3 times a week and that I should only fill my holder half full with solution. Is this correct?

please help! thanks
Emma

Cannot answer your technical questions but I found at my eye hospital (especially on Friday afternoon), they were trying to rush me out the door for the next patient; but because I was new to KC, I wanted some answers. I had to be quite firm and insist that they checked my eyes thoroughly, did a scan of my eyes (corneagram?) etc and told me what the results meant. When they realised that I was green but wasn't about to be pushed out of the door with a "You've got KC, nevermind, the lens guys will be in touch soon but see you in 3 months"; they were very helpful. This is a long way of saying perhaps you should see your opthamologist soon and insist on a thorough MOT?

Welcome to the forum.

Eye specialists have their own preferences, but the professionals here would recoemnd using cleaner every day and weekly (certainly at least monthly) to use a protein remover for the lenses.

As for only half filling the lens holder, the main thing is to have enough solution to cover the whole lens. In the lens case I have that would mean that it has to be atleast half full. When travelling with the lenses in their case I have it completly full so the lenses will always be coverd, even if the case is on its side or upside down.

I have found lenses can pop out for several reasons.

Drying out; if they do not stick limpet like on your eye, they can be easily blinked out.

Rapid eye movement; such as playing video games.

Moving eyes to the extreme; an example would be driving moving your eyes to the extreme right to look in the door mirror and a lens may be blinked out.

These can be easily resolved by using any of the eye drops on the market designed for lens wearers and people prone to dry eyes.

Another thing is that yes you condition may have changed meaning the lens will pop out. In a majority of cases this can happen with only a slight change in prescription.

A lens popping out is not a big problem unless it keeps happening. I remove my right lens by opening my eye as wide as possible and then blinking suddenly and out pops the lens completely painless.

Light sensitivity is quite common and most of us do good impressions of the Blues Brothers and the 2005 KC confrence did look like the local Maffia reunion

Hope this helps, keep asking questions we are here to help and I am sure you have many things of benefit to us that can be shared.

thanks for your replies Gareth and Matthew. They were very helpful. The gentleman that I se at the hospital also fits my lenses. Does this make him my opthamologist?

On the occasion when my contact did drop out I was having a good nosey over my shoulder at something so it could have been the angle that I had my eye at. I have took your advice and just booked myself in at the hospital and intend to ask lots of questions.

Where do I get protein from and are there certain types for Gas Permeables? Also what eye drops do you reccommend?

thanks
Emma

Emma

I have that with lenses, if I move my eyes to the extreme or too rapidly there's a fair chance they will pop out or at least move out of position...tis a pain in the bum.

That said I'm grateful for my lenses every day. I'm sure you'll agree that for us KC'ers, life is much better with them than without.

I sometimes try using specs to give my eyes a rest...soon find out it's hard to cope and go back to lenses. Whilst they may eb a pain, I'd hate to go without them!

Good luck.

thanks Paul. Yes I definately am grateful for my lenses! Unforuntaley I have never been prescribed glasses but i can cope wearing my lenses every day all day and just rest them when I'm sleeping.

PS Paul, just seen your signature about being a Yeovil fan...I'm a Port Vale fan and we play you on Saturday!!

Any high street optician or chemist that sells contact lens solutions will be able to show youe where the contact lens protein remover pills are. Usually in with the lens solutions.

Get the RGP ones and you usually need saline (which you probably have). Follow the instructions as some require soaking for 15 minutes others recomend a couple of hours soak.

I find they also help with lens wear comfort too.

Regards

Gareth

thanks Gareth. I don't think I do have saline. It seems for 5 years I haven't been using protein or saline!

You have just put a good case for if it ain't broke don't fix it.

At the end of the day we all take responsibility for our own health.

I use saline as I do react to some solutions, so using saline thoroughly washes off the cleaner and means the wetting solution/condition solution has less work to do.

Let us know what you decide and how you get on.