UK Keratoconus Self-Help and Support Association

Hi there,

Just thought i'd say hello.

I'm 27 years old, male, and live in the West Yorkshire area of UK. I've had KC (or at least i've noticed it) since late 2004, just a month before my wedding in fact when i was sat at a presentation and couldn't make out some writing on the screen from the back of the room whereas my colleague twice my age had no problems reading it...

Anyways got myself checked out soon after the wedding, and was told I had KC. My initial impression was well when can i get it fixed....

Obviously there isn't a quick fix and i've learnt to get along with it. Initially reading around and learning about how it affects you long term and the fact that you can't ever get rid of it was hard to deal with.

A couple of years on now and i'm kinda ok with it. I've been going for check ups which are now going to be annual. My right eye is quite bad. I can't read any writing unless it is about 10cm from my eye. I know everything is relative so i suppose what's 'bad' in my opinion is probably good by someone elses standards. With both eyes open i'm almost fine.

The worrying thing is that my optician told me on my last visit that my left eye also has KC and we need to keep an eye on it. I have been fitted with a hard lens as i was told the right eye was too far gone for glasses.. but i rarely wear it as it's just too painful and the gain although excellent, just isn't worth the discomfort.

I find my eyes are dry, and i've got a routine now where i use drops first thing and last thing at night, ocassionally during the day if needs be. I used Blink drops at first, but having tried the Boots own brand recently, i find them just as good and reasonably priced.

I try not to rub my eyes but find the temptation too great sometimes and give in.

Nobody else as far as i am aware has KC in my family, and i can't believe how quickly it developed. Earlier in 2004 i don't recall having any problems with vision, although my eyes used to feel quite dry. It seems to have developed quickly over a period of 6 - 9 months.

I spend a lot of time on forums on areas of interest, usually cars! and the wife discovered this place a few weeks ago and has been bugging me to join. So here I am.

I spoke to a nice lady called Marian who is running the Birmingham meet on 25th Nov, and i've requested an invite. So hopefully i'll meet some of you there in a couple of weeks.

Well that's it for now..

Take care all.

Fahad.

Hello Fahad, and welcome to the forum.

It was interesting to read your posts. KC can come on very suddenly, as you're discovering.

The thing about wearing those little "RGP" hard lenses is that they are incredibly painful to wear at first, but after you've broken them in, your eye usually becomes accustomed to it and they can be very comfortable, especially the KC-designed lenses (like Rose K).

If you really can't cope with the RGP lens, don't suffer in silence, tell your optometrist, and see if you can wear any of the other specialist lens types.

All the best,

Hi Fahad,

Welcome to the group and I hope to meet you at the Birmingham meet.

Dry eyes is quite common and this can make lens wear uncomfortable and should be discuused with your eye care practitioner.

My lenses were really painful and I could only get a few hours lens wear. I tried the Blink drops and although releif without the lenses is fine, the releif it gave to lens wear lasted less than an hour. I moved to Systane which initially I had to use every couple of hours but the comfort lasted that period. Down side I had to remove my lenses to use the drops , but after a month I could back off the eye drops and use them three times a day and after 2 - 3 month I reduced further to using the drops just before putting my lenses in and immediatly after. I get a regular 12 hours extremely comfortable lens wear and where necessary a lot more, yesterday I had them in for 19 hours with absolutly no dicomfort.

If you want more info, I will share in more etail my approach to sorting my dry eye problem and managing the situations that cause dry eye at the Birmingham meet.

It is relativly common to have KC in both eyes and a vast majority of cases do fine with contact lenses of one form or another.

KC can stabalise as quick as it starts, mine came on quick in March 2004 and since August 2004 it has been stable and I am on the same lenses.

I have found the opposite problem with my rgps. The first week of getting used to the lenses I was experiencing some discomfort but not too bad. I used some different drops but found that I was dislodging the lenses even though the bottle said that the lenses need not be removed. I have come to discover that the discomfort I felt was very minor and it is better left alone. They seem to stay in all day without too much of a problem.

Hello Fahad, and welcome to the forum.

It is true that you can't ever get rid of KC, but it can be managed. If one lens is uncomfortable, then keep going back to the optometrist until you find one that does.

Andrew

Hello again,

Thanks for the kind words and greetings guys.

My biggest problem with the lens is getting them in and then taking them out again - i can't wear them on my own and getting them out on some ocassions was a real challenge.

However i haven't actually tried wearing them and using drops at the same time. The drops were recommended by my optician earlier this year as he said my eyes weren't developing enough teardrops.

I suppose because i manage ok with both eyes open that i tend not wear the lens. I do find that dry weather, cold wind or bright sunlight aggrevate my eyes, and i end up with dark circles as my eyes feel tired..the drops tend to help a bit with that.

I'm very interested in the Systane treatment? I'd like to learn a bit more about that. I'm not sure what my lens are at the moment, I think they're Bosch and Laumb (excuse the spelling)? But they are rigid that's all i know.

Actually i'll try them today. I haven't worn them in months. Do they tend to have a life expectancy? I think they are just over a year old now. I'm interested to see myself whether my prescription has changed...

Cheers

Fahad

Not sure if lenses have a life expectancy as such, mine are just over 2 yeasr old now and witht hem I still get perfect vision.

Regarding Systane, this is the product web site;
Stsystane Lubricating Eye Drops

Once in the eye, they provide a protective film over the cornea to help reduce dehydration of the cornea through heat, wind, dry airconditioning. If you can manage a while without lenses, use the drops for a couple weeks first before trying lenses again. I get my drops from Post Optics.

I will point out though that what works for some is useless for another. This is because the tears are made from three components, a lipid component, water and a surfactant that makes the lipid component flow in the watery tears. Systane to me replaces the surfactant component, if your tears are defficient in another area then another eye drop will help. This is where trial and error comes in.

As you say you have not worn your lenses for sometime, it would be advisable to satrt building wear time from one hour again. I have had many an optomotrist and read on other forums that for each day we go without wearing lenses wwe loose approximatly one hour of lens wear time.

Download the Student leaflet from the home page and if not done so already, register your details with Anne Klepatz and you will get regular news letters and all sorts of KC related stuff.

Hope this helps.

Regards

Gareth

Hi Gareth,

Many thanks for all that info, i will check it out.

Well i'm writing to you now with my lens in. It's a bit painful, more irritating than painful i suppose..but Oh my God, the clarity!

I don't realise how poor my vision is until i put the lens in my right eye and EVERYTHING is just so much clearer..

I will try and build up the tolerance again.

The drops sound like a good idea, i'll see if i can order a quantity.

Thanks again

Fahad

Irritation is understandable if you have not worn your lenses for a while. Just be patient and get used to wearing the lenses bit by bit, even if it means a couple days wearing them for about an hour.

Good luck.

They had a special offer on Systane eye drops so i've ordered 3 bottles, hopefully get a 4th free!

I'll let you know how i get on.

I noticed they didn't have a secure checkout which was a bit worrying.

cheers