UK Keratoconus Self-Help and Support Association

i wanna know your experience about some thing.my vision is nearly perfect with rgp lenses but the problem is that i can't tolerate them anymore so i am wearing glasses now.they are comfortable but the vision is fairly bad.is it dangerous for my eye not to wear contact lenses for along time?can my eye case get worse or some thing like that?or become lazy? waiting for your answers.

Hi there.

No it won't do any damage if you leave your lenses out for a while. I find it good to have a day off from wearing lenses once a week. If i leave them out for a long time though i do notice my headaches get worse as my eyes are struggling to see!

It is good i think to have a break and wear glasses if you can. I wish that i could use some and be able to see but they have never worked. Take it easy and it is always good to ask questions! It is good to find out what other people do and think!

Eman

Sweet is of course right that you are unlikely todamage your eyes by resting them from contact lenses.

I see that you are having trouble with RGP lenses, and wonder whether you have tried any of the other sorts of lens that are available for people with KC?

If not, you might find other lenses more comfortable. (Kerasoft, hybrid lenses, piggy back, sclerals .. the list is now very extensive).

Do remember that, if you do return to using contact lenses, you ought to build your 'wear time' an hour a day.

All the best

Andrew

Eman,

If your corrected vision with glasses brings your vision up the level were you can function and carry on doing your work (eg driving level limit) I'd stick to that, even though wearing rgp would improve your eyesight.

My advice would be to only go onto contact lenses when you have to, as there is a risk that the lenses could aggravate the condition,
especially if an experienced KC contact lens fitter is not sourced eg. increased eye rubbing etc.

These is conflict regarding use of contact lenses and KC progression. Some say that it stabilises the condition by capping the cone,
some dont know, research in the US has found that lenses can cause progression of KC.
Based on my personal research I think the honest answer to that question is that we dont know......nobody has presented a convincing case or not done enough research, probably due to a lack of funding. Where is such funding going to come from? The contact lens industry is certainly unlikely to provide it nor would you expect that to happen as the investigation would be flawed!

The contact lens industry is big business, just like the cancer treatment industry. If anyone has read Philip Day's book "Why we are still dying to know the truth about cancer" you will know were I am coming from here.

I feel that that the focus for individual management of KC should be to prevent or delay as long as possible the need to have intrusive eye surgery. Thats the way I have managed so far after being diagnosed with KC 23 years ago.

Only take risks when you have no choice.

Thing to remeber in the UK it is often stated that for every day without lenses reduces your lens wear by about an hour per day.

So 2 days without lenses would reduce your normal lens wear by 2 hours.

Eman you do not say why your lenses are uncomforatble, what reason have you been given?

2 years ago I could not wear lenses for more than 2 hours. Air conditioning dried my eyes, as did working at a pc for long periods. I found that by finding a good lubricating eye drop to replace the tear component I was deficient in, increasing my Rhiboflavin intake and replacing caffeinated drinks, fizzy drinks and fruit juice drinks with water, after three months I was wearing lenses for 12 hours or more each day. I drink at least 2 litres of water per day and more on hot days so with you being in Egypt, you would need to drink far more.

Stevens comment about good lens fit is equally important. Even with what I consider an excellent lens fit, trying to improve it made no difference at all, it was purely down the vitamin, water and eye drops together. Singally neither made much of a difference, a definite accumulative effect.

Gareth,

Following discussions on Riboflavin. As KC sufferers, what do you think about us taking Riboflavin supplements - do you think its a good idea to make some improvements to our eyes and lives in general??

JoeK

I am not a fan of suplements of any kind as they are basically concentrated forms of what is naturally occuring. My feeling is vitamins and minerals loose something when they are processed. If we could get them pure then we would get minerals from eating coal!

Where possible I try and get my vitamins and minerals from fruit, veg and meat. My diet is pretty well balanced with th exception I eat foods that are naturally high in Rhiboflavin and eat more of them to get the extra.

Never done any dietry studies, but I do feel it ahs made a difference which could also be a phsycological one.

There was some talk that B2 taken orally may help at the crosslinking congress by a Dr, so it can't be dis-counted as of yet.

Going back to the topic, I think if your vision effects you, your personality, your dealings, then that must be stopped if at all possible.

It must be hard for a youngster more, with Keratoconus with their whole life in front of them, Keratoconus must not be allowed to cause traumatic experiances.

So yes, get comfort and vision if you can at all, health issues should/can be dealt by your trusted eye care provider, thats why you go to see them. Listen to them carefully. If they take time to treat you like an individual and answers you questions then they are worth their weight in gold. Get a good professional and that's as much as you can do. You will know when you have.

...just my belly...

i was diagnosed in early 2006 and have since been given gas permiable lenses which i am finding impossible to wear however my vision i can tell is getting worse but i just cant get to grips with them, i have an appointment at the hospital on the 28/02/2007 with my specialist but i am unsure of what questions to ask as i tend to go blank when i get in there!
i would be very grateful for any advise anyone could give me

many thanks
Beckie

Hi Beckie,

Welcome to the forum.

Regarding lenses being uncomfortable, it is important to not what the problems are.

If they are uncomfortable, is it the cornea or eye lid?

Where on the eye is the discomfort, top/bottom, left/right? It is sometimes easier to refer to where on the eye the discomfort is by refernce to hands on a clock, the ooptom can then home in on where the problem might be.

Regrading discomfort, is it dry, gritty, stabbing, eye keeps watering and such like.

All this helps the optom build a mental picture of what is ahppening and aids in many cases finding a more appropriate solution.

We commonly have dry eyes, so managing that too can drastically improve lens wear.

Consider your work/study/home environment; in what way can they be improved to prevent dry eyes, reduce brightness/glare and so on.

The contact lesn solutions can also cause irritation, the only ones I can tolerate are Bausch and Lomb solutions. I know many who need to use preservative free solutions, otherwise lens wear is an impossibility.

Asking about different lens options, there are many RGP lenses, regular contact lenses, Rose K, Rose K 2 which are also contact lenses. There are the soft perms, rgp contact with a soft skirt, piggy back which is wearing a soft lens with an rgp contact lens on top. Kerasoft which is a soft lens, scleral and mini scleral which is an rgp lens but does not touch the cornea.

I always write down my questions before hand, does not matter if your mind goes blank.