UK Keratoconus Self-Help and Support Association

Hi, I was diagnosed with KC some years ago and have it quite bad in my right eye and not too bad in my left, I have a rgp lens for my right eye but I find it very soon gets uncomfortable so don't wear it all the time, just for driving really, my question is, how good are the softperm lenses? is it something that is worth looking into?

Justin

Welcome to the forum!

From what you have said, I am suspecting that you only wear a lens in one eye?

Anyhow, there are a number of lenses you can try/explore, Softperm is a lens that MAY help, however many opticians dont like trying this lens as they think it does more harm than good to the eye (less oxygen gets through to the cornea, etc). The SoftPerm lens is also limited in the number of sizes that are available....the more advanced the KC is the less likely it is that the lens will be of any use...so in all honesty until you have been seen and know how far down the KC road you, its very hard to say if it will be of any use.

May be worth exploring RoseK and also Kerasoft........

hope that helps

J

Hi Justin,

If your KC is quite bad, you could be approaching scleral lens territory.

Scleral lenses look scary, but they are often surprisingly comfortable, and being made of RGP material allow a similar amount of oxygen to get to the cornea as a standard RGP lens.

As Jay said though, you will need to talk the options through with your optometrist.

Best of luck, and please keep us informed of your progress.

Thanks, it's just coming up to time for me to make an appointment with my optometrist, I shall discuss options then, the RGP lens isn't impossible, just a little uncomfortable

Justin

If its causing issues def get it aired and sorted out...an incorrect lens fit will do more harm than good to your eye....and I speak from experience here....the irritation to the cornea, the potential scarring etc are all NO NO's when you have KC

J

Hi Justin,

It may just be a problem to do with tears rather than a lens peroblem. My lens wear whent right down and was painful.

Have a look at this thread http://www.keratoconus-group.org.uk/forum/viewtopic.php?t=923

This basic details the problems I had and how I overcome them.

I am now at the point lens wear is up at about 5 hours in one go. If I take the lenses out and use drops before putting the lenses back it basically resets the clock. As a result, for the past 5 days I have been getting a toatl of 15 hours accumulated lens wear whcih is a big improvement.

Hope this helps.

Gareth

Hello Justin

Welcome to the forum.

I have nothing to add to the sage advice you received from others, except to say that even if you try a couple of different sorts of lens with no success, DON'T PANIC. There are several different materials and styles of lens, and what suits one person will not necessarily be the best solution for another.

All the best with your appointment. Let us know how you get on!

Andrew

GarethB wrote:Hi Justin,

It may just be a problem to do with tears rather than a lens peroblem. My lens wear whent right down and was painful.

Have a look at this thread http://www.keratoconus-group.org.uk/forum/viewtopic.php?t=923

This basic details the problems I had and how I overcome them.

I am now at the point lens wear is up at about 5 hours in one go. If I take the lenses out and use drops before putting the lenses back it basically resets the clock. As a result, for the past 5 days I have been getting a toatl of 15 hours accumulated lens wear whcih is a big improvement.

Hope this helps.

Gareth

Thanks, an interesting read and drying out could well be part of the problem

Justin

I was wearing softperms at one stage and found them a lot more comfortable than corneal rgps. As mentioned, they only come in 3 diameters so if your KC is fairly advanced then they may not be suitable. I got on fairly well with them for about a year but when my KC was too advanced the largest diameter was still a tight fit so had to try other lens types. Some lens fitters prefer not to use them as the oxygem permeability is quite low and long term use may cause capilleries to form in the cornea to supply the oxygen it is lacking. So if you do have these fitted and find them confortable do not wear them for too long. The most I wore them were for 12 hours.

Hello there and welcome to the forum!

I also have a RGP but did find it getting very painful and suffered with a red eye most of the time. I now use a piggy back system with my RGP lens and a soft one underneath. This has helped immensely.

Hoping that your appointment goes well and that you get some good results. Drop in and let us know how you're getting on!

Sweet X x X