UK Keratoconus Self-Help and Support Association

Hi,

I have had a few hospital appointments lately regarding my keratoconus. I am going to get contact lenses, my doctor said they were not the soft ones that people usually wear, i'm assuming it will be the rigid ones that ive read about on the net. I have read that these lenses can be uncomfortable and it can take a while to get used to them.

It's quite difficult to get reliable information on the web and my doctor is not very informative. Do other people on the forum have experience of these lenses? How long does it take to get used to them? what should I expect from them?

Thanks

Hello Louise, and welcome to the forum.

The lenses will probably be standard RGP lenses if you've not had them before; alternatively they may be a rigid lens with a soft skirt, or other soft lens for KC.

I can't really comment on the softer styles, but the RGP lenses will likely be very uncomfortable for the first few minutes. However, once your eye realises that tears alone will not wash them out it will begin the process of accepting the lens. You could take a week or three building up the wearing time gradually, and by then it is likely that the lenses won't hurt at all if you don't overwear them.

Many wearers report that they can get to the point where the lens is so comfortable that they don't know they're wearing it.

Hope you go that way!

Do keep us posted as to how you get on,

Hi Louise,

In addition to Johns comments, it is important not to rush the acclimatisation process.

It is often recomended to start at 1 or 2 hours and then build up by an hour per day upto an initial maximum of 8 hours. this is easily done if all goes well. However if you find things uncomfortable which some do find, then back off to a more comfortable time and build the time up more slowly.

Keeping a diary is also useful for when you have the lens fit checked so you can report back what the discomfort is like, where eactly is the discomfort such as the cornea or a certain part of the eye lid. This makes it easier for the lens fit to be adjusted if needs be.

Should the lens fit not be ideal from the off, that is quite common as the fitting of a KC eye is much down to the skill and experience of the lens fitter as it is a science.

We are here to share our experiences as well as suggest questions to ask the specialists.

Please let us know how you get on.

Regards

Gareth

Louise

All the best with your lenses. I wore various sorts of hard lens for over twenty years, and found that they gave me good sight and that they were fairly comfortable. From time to time I needed to have new lenses fitted, as my condition progressed, and then I needed different materials and different sorts and styles of lens.

The main thing here is that, if you take time to build up your wear time you ought to enjoy good sight for many years to come.

Andrew

Louise

Above and beyond whats already said, the nature of KC is so unique that I dont think any two people with KC will have the same results with Lenses...it really does depend on the eye, the cornea shape etc....

Some go about with the same lens and lens prescription for tens of years....others need a lens change every 6 months......its that open!

But I hope you post back and let us know how you got one

J

thanks, this is all very informative