pain

[janet puk]

hi i am new to the forum , and would greatly appreciate some advice , iam a nurse for people with learning difficulties and one of my ladies has this condition , but due her disability surgery is out of the question , but what i and my staff would like to know do people with this condition have pain my staff were told it will get painful but the literature states that it does not , and also without surgery , what are the prospects , does blindness occur . In fact any advice would be gratefully recieved , janet

[John Smith]

Hello Janet,

The difficult answer for you is that everyone with Keratoconus seems to be different.

However, I've not come across anyone who claims that their KC is actually painful. If a hydrops episode develops, that can be very painful apparently; but that does clear up either on its own after a few weeks, or with a little help from eye drops.

As for blindness, considered opinion is a categoric no; although you could at a very worst case have not a lot of useful vision unaided.

The aids are generally rigid contact lenses, either small "traditional" RGP lenses or scary-at-first scleral lenses. The sclerals are surprisingly often more comfortable than the corneal lenses; and there is at least one example on the message board of someone with Downs having great success with Sclerals. If your patient cannot be grafted and has not yet tried out a scleral lens, she could have a very nice surprise waiting for her!

KC can be a very frustrating condition, but with the right help, most of us lead pretty much normal lives.

[janet puk]

thank you john for your speedy reply , that will help myself and my staff with her care , due to the lady constantly rubbing her eyes she is unable even to have lens so any treatment is out of the question but my issue with pain has been answered so will take it back and discuss with staff thanks alot for the help and ill keep reading the forum very use for me even though i dont have the condition janet

[Anna Mason]

Just a quick note if your patient rubs her eyes that does get very painful indeed just a small amount of rubbing can make an already sensitive eye feel on fire. Then every time you blink it hurts.

She may also be very light sensitive. As a child my father would whip open the curtains shouting Wakey Wakey Rise and Shine and I just wanted to cry because the sudden light hurt so much but then he didnt know that and whats the point of telling him now he would be devestated. At the time I thought everyone was like me and maybe I made too much fuss.

Does she rub her eyes because they are itchy or irritated or is it a habit? Herbal Comfort Drops might help but I dont know what you are allowed to do to help her.

[janet puk]

thanks for your reply , she has always rubbed her eyes but we dont know if she rubs because of discomfort as she has no verbal communication so its all guess work , we arent allowed to use what is term " homely" medicines so the drops are out of the question , but it my be a point to disscuss with GP thanks janet

[davidholman]

Janet,

The issue of pain is a relative one. For me there is no 'pain' as such.

I have had KC for about 20 years, but as a hay fever sufferer, I do get an irritation in my eyes, which I have to say, I rub to ease the 'discomfort' This usually works after a minute or so and then I do not feel the need to rub, so I stop!

There is also the problem of bright light mentioned above, sometimes in the summer when driving and bright sunlight I have to pull over and wait about 30 minutes with my eyes shaded to allow the discomfort to subside. Sunglasses help enormously with this problem and also seem to reduce the allergic reactions as well.

Overall these are the only 'unpleasant' feeling the problem causes me.

I consider my self lucky to have a full time job despite having KC and the fact that the contact lenses give me vision that is better than some of my colleagues who don't have KC.

Regards

David HOLMAN
Cornwall

[Andrew MacLean]

Hello Janet

There are two (or maybe three) ways in which I have pain related to my KC.

1 Bright light causes pain. This is due, I think, to the way in which the KC Cornea scatters light onto surfaces within the eye that have not beend eveloped to receive light. This effect give sise to what is usually called "photophobia", but which is probably more accurately described as "light aversion".

2 Damage to the eye caused by wearing contact lenses. This would probably incude damage caused by tiny specs of dust lodging behind corneal lenses, but als includes damage to the cornea caused by the lens having an abbrasive effect on the already diseased cornea.

3 Eye rubbing! (In my case, guilty as charged!)

Andrew

[Anne Klepacz]

The Multiple Disabilities Unit of the RNIB have produced a useful booklet 'Keratoconus in people with learning difficulties'. You can contact them on 020 7388 1266 and ask for the Unit. They also produce a number of other factsheets on various aspects of eye care in people with learning difficulties which you might find useful.

[janet puk]

thanks for the leaflet info ill do it today when at work

[Bob Somi]

janet,

part of the problem is the tear flow over the cornea. in KC patients its not even and can cause some iritation. The temptation is to rub but most KC patients realise this is counterproductive.

There is also an unproven suspicion that rubbing eyes either leads to KC or accelerates the condition.

Most KC patients manage by washing if posssible or comfort drops. Blinking slowly periodically and delberately to spread the normal tears can help a lot .