Hello again

[Judith Tomlinson Harrison]

I have not posted to the forum for some time.
Last summer my optician picked up on changes in my eyes and mentionned the word Keratoconus. He referred me to the local hospital and I spent a long time on various waiting lists working my way through a tiered system. Some professionals said yes I have it and some said no. When I got to see a consultant I was referred to a contact lens specialist and it was at that point that I found the forum. The specialist said no I definately do not have it but that lenses would help me. I declined them as I have horrific memories of having stiches taken out of my eyes in the past as a young child and cannot bear anyone (myself included) touching my eyes. These days squint operations have self dissolving stitches.

Anyway due to all the conflicting opinions I asked to see the consultant again to find out exactly what is happening to my eyes.
I saw him today and he said YES I do have keratoconus but it is mild. I commented that being aged 57 wasn't that unusual. He said I have probably had it for many years undiagnosed and that it must be developing very very slowly. I also have astigmatism and nystagmus. The astigmatism was diagnosed only within the last ten years but again have had it most of my life, To think that I was taken to the eye clinic on a regular basis since being 8 months old and have had regular eye tests all my life, and every year for the past ten years. I feel quite upset that I have gone undiagnosed all these years. Knowledge and technology are now superb, they must not have been available in the past.
I must be positive though and be thankful that I only have mild KC. I was told that due to my age and the slow progress it is unlikely I will need any treatment and I was discharged and told to have frequent eye tests and frequent prescription changes to my glasses.
Since January I have fallen twice over kerbs I am careful to only cross roads at safe points and try not to run for busses. I use Supernova software at work and a CCTV system plus a desk lamp.
When I read some of the stories on this forum I consider myself to be one of the lucky ones. I will continue to have regular tests and wear my glasses.
Does anyone else, who is an older person, have any stories of years of not being diagnosed??
Judith

[Andrew MacLean]

You are not the only person here who has nystagmus! I wonder how frequently it pops up alongside KC

I am one year younger than you, but have lived with the knowledge that I have KC for many years. but it was only in 1993 that I had my forst (and so far only) eye operation.

I think it is probably more common than you would think for KC to be undiagnosed for a long time. Lynn has posted somewhere that it is not being diagnosed by the use of laser topographies that are taken with a view to laser surgery, so the medics may now be finding KC in patients who might otherwise have lived and died having never knwon they had this condition.

Hope all stays well with you.

Andrew

[Lynn White]

Judith!

As Andrew says, I have been posting to the effect that KC is often under diagnosed.

This is not actually down to incompetent professionals, but rather to how KC is perceived as a condition.

You see, for a great many years, KC has been seen as a rare condition that was only confirmed when certain criterion were met. If your eyes did not show these signs then it was often not confirmed as KC. These included semi-circular deposits of iron in the cornea (Fleischers sign) and folds in the back surface of the cornea.

With the onset of laser refractive surgery, corneal topographies have become more common and this is indeed a new technological breakthrough - especially as the price of such techonology has come down. With such technology, very mild, or subclinical, KC is now detectable which does not show such obvious clincial signs.

It is therefore possible for many mild KC;s to be out there which have not been picked up as yet. This is precisely why i am gathering information for an article to improve KC detection for those optometrists not familiar with the condition. If you view the thread "Reasearching a KC article" you will find the stories of several members and how they were diagnosed.

Lynn

[Anne Klepacz]

Lynn, I seem to remember hearing that there is also something called 'late onset KC' which can happen to people in their 50s who've previously had good vision and tends to stay mild. Certainly over the years, we've heard from a few people like that. I'm sure you'll put me right if I'm talking rubbish!
Anne

[Lynn White]

Yes you are right Anne...some KC does not come on at all until later in life and generally it is milder than early onset. I was concentrating on what the consultant said and forgot to mention that! Also Judith's astigmatism came on about ten years ago which might suggest KC was starting then.

All very difficult to say though, without access to previous years records!

Lynn

[GarethB]

Could this have something to do woth hormaonal changes?

I have heard the KC in teenages may be triggered by changes in hormones. This then leads on to perhaps this is why some of the women here have reported a worsening or been diagnosed with KC after pregnancy. Afterall women get free eye tests during pregnancy (well my wife did anyway). Is it possible if hormones are one of the triggers this would be by women and possibly men can get diagnosed with KC in later life?

Gareth

[Judith Tomlinson Harrison]

Thank you all for your replies and especially Lynn for your explanation. It does make me see things in a different light and I feel a lot better now in that I am no longer angry.
Thinking it through I can understand things have improved over the years.
What has sprung to mind is my local optician telling my parents when I was about 7 or 8 years old that he could not test me properly because my eyes would not stay still. I assume that would have been the nystagmus. Could it be that is another condition that very little was known about back in the fifties.

Can I ask if there is anything genetic involved. My nephew aged 23 (An American living in Arizona) has astigmatism. My late father always had glasses with very thick lenses although my mother cannot tell me what eye condition(s) he had.
Should I be advising my nephew to get checked for KC, or should I just advise him to make sure he has regular checks so as not to alarm him. After all he may not have KC
Judith

[Lynn White]

Judith...

New research is pointing up genetic connections, although not as obvious as a direct inheritance. One way to keep tabs on this is to have a corneal topography scan done. This checks the surface shape of the cornea and very early tell tale signs of KC can be picked up.

It is easier to get done in the US than here because more practitioners have corneal topography machines. This is an easy way to be screened at regular intervals for peace of mind.

A close relative of mine turned up with sub-clinical KC after a topo

Andgraphy (she was just interested in seeing what her eyes were like.. her husband is actually KC) and we hadn't suspected a thing previously - but going back in the family, there has been a history of high astigmatism and, tracing ancestry back, one case of blindness has turned up and another who was an inpatient in Manchester Royal Eye Hospital in the 1901 census! So we are beginning to wonder ourselves if KC is running through here!

Its not a case of "worrying" peopel it is taking common sense precautions; After all, in the UK, peopel with close relatives who have glaucoma are allowed free eye tests for screening purposes, so suggesting your nephew gets checked out is merely sensible.

As for your nystagmus... yes it would have caused difficulties back in the fifties. Your poor vision would have been attributed to that, as nystagmus itself reduces visual acuity a lot, and therefore no-one would have looked too closely for another cause on top of that. And indeed, if this is late onset, it may not have been present then anyway.

Its really only since the more widespread use of topography, especially in laser clinics, that early KC is now being detected in higher numbers.

Lynn

[Judith Tomlinson Harrison]

Thanks Lynn. I will take your advice.
You really know your stuff.
My mild KC was indeed diagnosed through the topography test. The consultant told me on Tuesday he had discussed my test result with colleagues to reach a conclusion.
When I had the test they told me they couldn't get a reading because of the nystagmus and I would have to wait until a more advanced machine was available (until the hospital had the funds to purchase it)
However it would seem that they did get something on which to make a diagnosis. After I had made it clear I am OK with glasses and don't want lenses, that's when they discharged me. Maybe they regarded me as unco-operative. When I asked why my eyes were so watery when I have read about people with KC having dry eyes on this site, I was told that I have obviously got too much information and my question wasn't answered.

It is at work I have the most problems with adequate lighting as i don't like this modern office lighting that is covered over with panels. At home I find the natural daylight bulbs wonderful as I enjoy knitting and tapestry. Computers at work are OK but the software I have doesn't change the colours.
Colours seem to be important and I cannot always distinguish text and background if the colour tone is similar. I like a good contrast and font size 18.
However I have asked to be referred to Occupational Health to see if I can have a new workplace assessment.,
Subtitles on the telly are a nightmare. If they come up, I switch channels.
Anyway I now intend to watch these boards more often.
Thanks again
Judith

[GarethB]

Judith,

Anyone who uses computers alot are entitled to a VDU assesment which is carreid out by occuupational health. If they say you need ectra equipment the company has to provide this. There is help for them to absorb the cost through the governments Access to Work scheme.

Equipment may be a larger monitor wher you can change colours, magnification software to name but a few! Of occupational health feel they may not be able to help, then most will work with RNIB or Action For the Blind who are there to advise and help employers make the best adjustmnets their employees with seight problems have.