UK Keratoconus Self-Help and Support Association

I have just found out about this forum and have been reading. Its been very helpful. My husband found out two years ago that he has KC. We have been relying on the information that his optician has provided. I found out quite a few things on this forum that i didn't know before.
My husband was given a hard lens to wear every day in his right eye. It hurts a lot and that's why he doesn't like to wear it.
I read that some kind of lens cushion can be provided so that it doesn't hurt as much. Is that true?
If it is, can somebody please provide details of it?

Thanks

I think we KC people have two companions.......our spouses and pain, and the pain is with us most of the time. Sorry, but we have all lbeen there. Trust me, a proper fit of the contacts will take away 99% of the discomfort. I had intense, serious pain every day after work for a long time. I could see all day, then come home, crying while I drove, take my lenses out and be blind with my family each day. It was so damned frustrating to be able to see clients all day and not see my daughter in the evening.

Ask your eye care provider for RGP lenses.....and get the big ones. Mine are nearly the diameter of a US Dime....or about one CM.....never measured them, but they are much bigger than a regular hard lens.

Then, there are combination lenses, hard in the middle and having a soft skirt. Very comfortable, very costly and they don't last long. My last pair of these lasted less than a year and cost about $225 US each.

Then I went to standard hard lenses..then the RGPs....and had to try 14 pairs to get the ones that worked......and a year later did it all again as my corneas had puffed out again.

Best wishes. It isn't the end of the world, you WILL SURVIVE. You may have to try several eye care specialists. Pain is a signal, take it and get a better fit to put off the permanant damage to your tissues that a bad fit will cause.

Cheer, Piper

Hi Shafaq, and welcome to the forum.

If a contact lens hurts badly, then I'd suggest that your husband stops wearing it and gets himself back to the opticians.

There are many different types of contact lens suitable for people with KC. This would include the "softperm" lens mentioned by Piper, or the simpler "piggyback" approach. With piggybacking, the wearer has a soft contact lens of zero prescription (sometimes called a "bandage lens") and wears the RGP lens on top.

The other major alternative is the scleral lens in which there is no contact between the lens and the cornea - it sits on the white of the eye.

Do let us know how your husband gets on.

Eye drops can also help with lubricating the eye as RGP lenses ned to move slight to allow tears to flow over the cornea and oxygenate it.

I have found such an approach and ensuring I am properly hydrated, away from air conditioning (well as far as is possible in a modern office) and that I take regular breaks from reading or using the pc, no more than 30 minutes at a time. This has resulted in going from 2 hours of discomfort before I had to remove a lens to a regular 12 hours plus extremely comfortable lens wear.

The lens prescription has remained unchanged for 2 years.

Yeah, basically doesn't sound right. Shouldn't be that bad! There should be some other options that the NHS can supply (piggy backing / Rose K-Lenses etc).

I agree.

I use rose k lenses with daily disposables.


Big Thank you to Ali who helped me out last week.

Matthew,

The NHS do indeed supply both Rose-K/K2 and Piggy-back lenses.

It's a postcode lottery, unfortunately.

Thanks a lot everyone for replying. We're both considering all the suggestions. You all have been extremely helpful. We really appreciate it. Thanks!

Shafaq!

Hello there and welcome to the forum!

It can take a long time to find the right lens and fit which can be very frustrating but well worth it in the end. I piggyback because my hard lens was giving me such pain. The plain soft lens underneath does act like a 'cushion' so i don't feel the hard lens at all!

I hope that he goes back and gets some help. Very few people get the right lens in the beginning. I am going back tomorrow to get a lens for my grafted eye as the first one was not the right fit. Am just hoping that this one will be better!

Take care ... Sweet X x X

Sweet.....best of luck with the refit. tell us, how did things look with the first fitting of lenses? Aside from the pain, wat it what you expected? I can't wait to see again. Normal-sighted persons have no clue what we KCs live with.

Piper