UK Keratoconus Self-Help and Support Association

Hi there everybody, hows it going?

firstlt let me say that this forum is fantastic! ive been confused and havent really had anyone i can talk to about the condition, and scanning through the forum, i can see that you guys are generally really cool!
Im quite new to this, so i thought a good place to start was to introduce myself

my vision first started getting worse about 3 years ago, but at that point it wasnt really an issue...about 18months ago i did my motorcycle test and noticed that i couldnt read the licence plate from the required distance even with my glasses on. Due to my schedule (being in uni) and partly denial, i waited december of last year just to get stronger glasses as i was having serious problems with glare/ghosting whilst driving. it was then i was told that i had KC. i probably went through the majority of emotions at that point, happy that i knew what it was, confused about what it meant and devestaed that it was illegal for me to drive/ride, and fear at what was to come. i was told that RGP lenses were the best option for me, and that i was being refered to the moorfeild hospital so i could be assessed and fitted.
well on the 26th of january i was seen by the specialists, and fitted with a set of contacts, im not sure which brand but i know their manufactured by moorfeilds. I was slightly annoyed because i just spent about 60 quid on a set of lenses for my glasses from specssavers and after being seen by one of the specialist was told that their perscription was way off! my visions improves greatly with the glasses , to the point where im well within legal driving limits and is 20/21 with the lenses

Since the first time ive ever had contacts on my eyeballs is when i was being fitted with them (and what an experince that was ), im not sure how theyre supposed to feel. i was blinking and tearing up a hell of a lot when i had what the Dr said was a "great fit", this got better after she gave me some anesthtic eye drops. the only time i could feel them was when i was blinking and they moved slightly which is was causing the blinking and tears....is this normal? reading through the forum ive seen all different kinda of reactions to contacts so its a bit confusing to gauge....what are your experiences with rgp lenses? how long did it take you to adjust to them if u have at all?

sorry for such a long post, i promise the rest wont be that long! cheers in advance for any replies
Alex O

Hello Alex and welcome to the forum.

I guess we all went through the stage where our eyes were trying hard to expel the lenses that we had carefully put into them. this is one reason why we are encouraged to build up our lens wear time a little each day so that when we have built up a tolerance to lenses we can wear them more or less all day and enjoy a near-normal level of vision.

that said, if your lenses are very uncomfortable it may be that you would be better suited to a different lens type or lens material.

Every good wish.

Andrew

Hi Alex,

Welcome to the forum.

I’ve worn contact lenses for 35 years. Initially for short-sightedness and a mild astigmatism but about 20 years ago it was discovered that I had an unusual astigmatism and my old hard lenses were changed to bespoke RGP corneal lenses.

My initial motivation to wear contact lenses was pure vanity. These days I need contact lenses to see anything that is more than a couple of inches from my eyes so my contact lenses are part of me – without them I’m lost.

Have you got your lenses yet? Or are you waiting for them to arrive in the post/collect them?

When you get your lenses do build up wear time slowly. Initially your eyes will produce tears – it’s not natural to have something in your eye after all! However if they are causing pain then you have a problem and you would need to get it checked out.

Build up wear time slowly, as instructed, and do not be tempted to overdo it because they are comfortable and you can see – as this is likely to cause problems the following day!

You’ll probably have an appointment in a month or so to check how you are getting on. It’s quite likely that adjustments to the lens prescriptions will be required, as Andrew says there are lenses made from different materials. There are also lenses with different diameters, steepness and edge lift – not to mention the strength of the lenses! Also different lens solutions can also affect your eyes.

Let us know how you get on.

Lia

thanks for the replys guys

I havent picked them up yet, my next appointment with the hospital is in march so i hope all goes well! i definently wont be tempted to keep them in longer than i should, rememebering how much i was blinking with them in lol.

reading another post (KC and sports) its intresting to think how much you have to adjust because of the condition. Do any sufferers here ride motorbikes/cycle? how do you manage with contact wear/glasses? Is this a condition you Have to declare with the DVLA/anyforms that ask about long term and chronic conditions?

hands up to riding a motorbike and living with KC.

RE the driving licence and notifying DVLA, as long as you get driving standard vision either with contact lenses or glasses you are fine for a car or motorbike licence without notifying the DVLA (slightly different if you hold a PSV/HGV licence - you need to notify them if you hold one of these). You just need to declare to the DVLA that you have corrected vision for car/bike licence.

I am only seriously affected in one eye, so am ok riding with corrected glasses for my good eye. Regarding glasses, take your helmet along when you chose your glasses to see if the glasses you like can be put on with your helmet on - helmet on first then glasses (i have seen someone trying to put their full face helmet on whilst wearing glasses). Some people prefer flip-front helmets so they dont have the faff of trying to get glasses on or off with the helmet. RE wearing CL when on the bike, make sure you have plenty of wetting drops and stop and use them regularly - it will stop the wind drying your eyes/CL out and keep your eyes comfy.
I am wary of keeping my visor open when i have worn lenses for fear of losing them.
I find it is easier if you have a tinted visor (Legal of course) rather than having to carry prescription sunglasses and normal glasses. I acutally have two pairs of glasses, one for every day and one for when i am riding the bike, as the helmet can twist the glasses over time.

Yup. Notify the DVLA that you have KC a d that you make the eyesight requirements. Also notify your motor insurer. It costs nothing and the simple fact of your disclosure will avoid any awkwardness if you ever need to make a claim.

Andrew

Thanks for the advise and tips, hopefully it will all go well when i gpo back and pick them up.....and get taught how to fit them