UK Keratoconus Self-Help and Support Association

Hi

Just to introduce myself, my name's Andrew and I live in the north east.

I was first diagnosed with KC at around 25, hadn't worn glasses previously but found I just couldn't see as well as I used to be able to. It was picked up on my second test and I was prescribed glasses.

It got worse for a couple of years and then stabilised. I'm 36 now and had the pretty much the same glasses prescription for about 4 years now.

I've always had a problem, as I suspect most of you have, with reflection and glare. For instance I can't read a car number plate that's more than twenty feet away during the day as although things aren't blurry, theres a lot reflection. At night I can easily read the same number plate as my headlights are shining on it and there is only the one source of light.

I work in IT and I always have trouble reading the screen unless I'm about 12 inches away.

Now, just had my latest eye test and although the prescription hasn't changed the optometrist has recommended I went to contacts, (they aren't the soft ones so I'm assuming they're RGP). I tried them on today and the difference was unbelievable, everything was sharper and not as 'glarey'. They were uncomfortable initially, but hopefully I'll get used to them.

OK, now for the question. Am I likely to cause myself any problems by going down the cl route. I guess I'm most concerend about scarring and drying out/infections.

Or is it a case of better the devil you know ...

I do feel a little bit of a fraud as the problems I have pale compared to some of the others I've read.

Thanks

Andy

Hi Andy

Hard to say if its the right or wrong route to managing KC, however if you have come to the end of the road for Specs, than CL are the next thing...although....I would first try Soft Lenses for KC rather than jump into Hard Lenses........

However, you mentioned that you have tried them and saw a great improvement which is good!.

The only caution with CL are that you need to stay on top of the Fitting and Comfort. KC CAN progress at an alarming rate; and an incorrect fitting or continued use of a lens that is not correct for the KC cornea can lead to other issues.

If you have trust in your optician and are seen at least every 6 months than I cant see why there should be issues.....

Hope that helps

j

Hi Jay

Thanks for that.

When you say soft lenses do you mean the normal monthly/daily disposable ones?

Did ask her about these but she said that they would give no improvemrnt as they would just mould to my cornea instead of creating a 'false' one as the rgp ones would.

When you say that KC can change at at an alarming rate, is there a general pattern it follows regarding age or is age immaterial?

Thanks

Andy

Andy

There has been phenominal advances in Soft materials which have been proven to be just as good as RGP (hard lenses). However, there success does depend on how advanced your KC is.....but from what I know; they are worth exploring at the initial onset of KC through to the medium stages.

Lenses such as Kerasoft, Soflex, are to name but a few. If you do a search on the above lens names on this board you will see a number of posts mentioning this lenses in my previous posts.

There is no set pattern for KC...it can remain in its current stage for years and years, OR it can progress on a month in, month out basis. Thats why regular checkups with your optician is essential in my opinion; as its better to spot changes then to wait for them to develop and react to them.

J

Andrew, welcome to the forum!

I have never been able to see with glasses, so have had lenses for about 15 years now. I wouldn't say that it has always been easy because it hasn't, and you do need to be sure that you are making the right choice for you. But indeed many people wear contact lenses every day with no trouble, and if your vision is excellent with them then i would suggest trying it!

The thing is, if glasses aren't correcting your vision well enough then you can't change this without lenses or maybe a graft in future. So i would go ahead and try them! You just need to be aware of not overdoing wearing time, and making sure that you are very strict on keeping them clean to reduce the risk of infection. But you will get there!

Comfort is a big issue but building up wearing time is a major start, and having only just tried them i would be surprised if you found them very comfortable first time round! It takes time, so don't push yourself.

Let us know how you get on!

Sweet X x X

Thanks for the replies.

My only worry, and it's probably based on my own ignorance is that at the moment it seems to be stable and i'm getting by. I don't want to do anything that might instigate any changes.

Had a good look through the previous posts and can I just say what a fantastic site you have here, the positive attitude you all display is wonderful despite the problems KC throws at you.

Andy

Hi Andrew

My opinion and it is only 'my opinion' would be to manage your KC with your glasses for as long as you can.

By this I mean use glasses for as long as they give you suitable vision and this may well not be 20/20 or 6/6.
If glare is a real problem well you may need to move onto the next stage and that may well be cantact lenses of some sort however, do as J suggests and try to research the different types of KC lenses available.

It seems not to be uncommon for some eyecare specialists to be set in their ways and refuse to believe that a type of soft lens may work, when in reality we are all very different and I would expect that no 2 patients are the same, which is why fitting for KC can be such a challenge. What works on one patient may not work on another.

Personally I was only diagnosed at 32 (back in 2000) by 34 my glasses which I had been wearing since starting to learn to drive at 17 no longer worked at all and RGP lenses were tried. Sadly none tried fitted and after approx 9 months backwards and forwards trying various lenses it was decided to try me with scleral lenses (a bit of a shock to the system as they are rather large and funny looking) this fortunately worked and for 12 months I was almost normal with up to 11 hours a day I could see and then in May 2004 I needed to have a lens refitted and it has been a bit rubbish since, no more driving and greatly reduced wearing time.

As I said we are all very different and all find ways to cope. I am 37 now just 12 months older than you.

Do what you feel is best for you, research if you can and maybe get a second opinion.

best wishes

Susan

Andrew!

Yup, take advice and then, on the basis of the best advice available, you decide.

Ask your optometrist what (s)he thinks. Even ask your ophthalmologist. Take sounding sform other glasses and contact lens wearers.

I started wearing contact lenses when I was not much younger than you are now, and I did not regret either using specs for as long as I did, nor moving to lenses when I did.

All the best, from one bearer of a distinguished first name to another!

Andrew

Andy

Reading your post takes me back about 18 months.

I was in exactly your position, having exactly the same doubts and concerns and asking all the same questions.

I got lucky. The Optom that I was sent to see is fantastic. He has been patient, open minded and clear with explanations.

I thought I was doing OK with specs, and to an extent I was, although I did notice that more people were saying to me that they had seen me in the street and I'd ignored them. Truth was, I couldn't see them. Something had to be done.

I started out with lenses in about November 2004. Couldn't stand them at first, they hurt, they were hard work and they made me feel physically sick. They sat on the shelf in the bathroom for months, untouched and very much unloved!

However, I persevered and eventually moved onto a hybrid type of lens called Comfort 02. Don't ask me the technical bits, but it's a hard lens with softish edges which makes it easier to wear.

From there on in - I made progress.

Zooming forward to today, I can wear my lenses for as long as I want or need in a day, and the world is much clearer. Not perfect but clearer.

I find it really important to give my eyes an occasional 'holiday' from lenses, to allow them to relax etc. At first it can be a bit tough, but it's amazing how quickly you readjust to the blur....
The biggest problem I have when taking lenses out is headaches. I had some great advice from this board. The best of which was to allow my eyes to relax having taken lenses out...it works.

As for specs, they still play an important part. Lenses are used for work, so I tend to let the specs take over in the evening for TV, reading and the like.

You and I are the same age Andy, so we're probably experiencing the same stresses of family life, working all hours and all that jazz. You have my sympathy, but believe me coping with lenses is really not that bad, and the benefits far outweigh the inconvenience.

If you want any further advice, or a chat...please feel free to PM me.

Best of luck

Paul

Spot on, Paul. None of us really knows how bad our sight had become until we are given decent correction and we can compare the 'before' and 'after'.

You articulated something I had known, but for which I'd not have been able to find the words. For that, many thanks.