Researching a KC article...

[jayuk]

Lynn

I had a kinda mixed experience with mine!

At the time I was having a routine eye exam, and popped into SpecSavers......part of my examination involved another gentlement who had recently ben qualified, and the "lead" was also someone who was recently qualified.

At this stage, my only quible with regards to my vision was that I had to slightly squint at the back of the class to see the White and Black board at college.

Anyway, they both had a look at my eyes, and the prescription was extremely light...I am talking 0.5 and 0.75 if mem serves me right. But one of the newly qualified decdided to look closer at my eyes and said the K word!. He looked at his colleague and said that there is a slight chance that my cornea is showing signs of Keratoconus. (At this stage I thought this was a greek soft drink or something!!). So they both called in the Head Optom and he concluded the same....but there advice was to take the glasses and return in 12 months (I wont go into what I thought of this advice Now lol!)

Anyway, I then decided to do to get a second opinion I think 6-8 months later at another well known high street store (nameless as youll know why in a second). The lady there took a look at my eyes and her jaw dropped. She said I have Keratoconus and will need to be seen my MEH. I then asked what this is; and she said its not good. Eventually your cornea will protrude and fall off. I KID YOU NOT! This is exactly what she said! So as you can imagine, i left the place really worried, and for about 10 mins I didnt know where I was..!

Anyway.....since then theres been alot of history, which you kinda know anyway...but thats my initial experience....although I must say that for the two guys to have spotted it at such an early stage was impressive!

Jay

[Louise Pembroke]

I saw an optom at 14 but only because everyone else in my class was seeing him! He was surprised that I had not noticed the difference in my vision at an earlier point. He gave me glasses but said I needed the hospital referral pretty early on. I found out later that he knew straight away it was KC and that it was only the 2nd case he'd seen in 20 years.
My parents paid for me to see a consultant because the wait on the NHS was a few months. I didn't really grasp it at all whether that was done to my age or how it was explained I'm not sure. I then attended the hospital as an NHS patient. It was really the contact lens dept nurse who helped me the most especially when it all became problematic at 16-17. Without her it would have been much worse. Overall, I have usually found the optoms far more helpful and sensitive at Moorfields, they are also more prepared to discuss and give fuller answers than the ophthalmologists, in my experience

[rosemary johnson]

Thank you all...

Just popping in here to say yes, this is what I want and it is very helpful. It is clear that a supportive optom at the diagnosis stage does help - as opposed to someone just saying there is something wrong and sending the patient off to the hospital.

I was interested in what Kim said about not going blind. Would more of you feel better if this was told to you right away? I personally always am wary of saying that at the inital detection stage in case it makes patients worry more. (As in "I just came in for an eye test and now she is talking about BLINDNESS?") However, I guess people get the point there is something wrong when the test is taking longer and the optom is struggling to get a clear image for you.

Please keep the info coming - this is excellent .

Story to follow.
As regards not going blind - I'm sure many people would be reassured.
However - is it true?
"Very rarely" is more accurate - is that reassuring?
There's a great difference between "can't see anything, not even light and dark" and the legal definition of blindness. There are few people who've got to the former category because of KC; there are a few who meetlegal blindness criteria, and I think a lot more who would if we couldn't wear lenses.
SOme of us are reigstered as "partially sighted" - which is some parts of the world, AIUI, is termed "legally blind".
Reassurance is valuable, yes - but not at the expense of accuracy. never mind putting the opticians/optoms at risk in this increasingly litigious world.
My two penn'orth.
Rosemary

[Andrew MacLean]

Rosemary is right

When I stoppd being able to wear lenses I was registered blind, and I remained "legally" blind until August or September of last year .. 20 months after my graft.

All better now. The Australian KC site uses a form of words like "Keratoconus can lead to the loss of sight to the point where, in most urisdictions, the sufferer will be classified as leagally blind".

Not sure how reassuring this would be for Lynn's clients, though.

Andrew

[Lynn White]

Obviously professionals are aware of the legally blind issues which is actually why most of us don't bring the subject up at initial diagnostic stages. Its too soon to be splitting technical hairs!

It is a hard question to answer, especially for older patients who have macular deggenration because the hospitals invariably say "You won't go blind" which is technically true as you still retain peripheral vision. However, the central visual loss can be so devastating that the person is unable to cope living on their own and manage every day tasks like cooking.

This is why I was asking really, as discussing possible blind or partially sighted registration at the point you are explaining about the condition for the first time could be unnerving I would have thought?

Actually I think KC is exceptional in that vision is so bad without contacts yet can be totally normal with and specs are no help at all in advanced cases.. This means it is difficult to sort a meaningful "label" for the purposes of Government beaurocracy.. "Potentially partially sighted"??? "Intermittently blind?"

So far it would seem better communication at diagnosis is a must which is what I thought, but how much to tell at what stage is what I am wondering about next....

[Sweet]

It is really difficult and i think it depends as well on what patients expect from their vision. Last year i went from 6/9 vision in one eye to 6/60 overnight which is by no means blind but i thought that i might as well have been! I feel blind without wearing lenses as i'm expecting to see well enough to read and go to work and without lenses i can't see well enough to do that.

Maybe there should be more emphasis on there being a decrease in vision which would hopefully be improved with lenses. Then at least patients have some hope, as me being told i would go blind was the last thing i needed to hear as i obviously took it as not being able to see anything!

The optom was right on one thing though as i did need a graft in my twenties but on the blindness score i haven't crossed it yet!

Sweet X x X

[Louise Pembroke]

yes KC is exceptional as you say Lynne in that with lenses sight can be very good but without them so very bad that life and work is difficult or not possible as you say Sweet. I know I cannot cope without my lens and I feel partially sighted without it. I think we need more definition than sighted/blind or partial. For me, [and perhaps you Sweet?] I feel part-time partial vision would fit the bill, ie when we take our lens out!

[rosemary johnson]

diagnosis story, as promised.
I started wearing glasses for "ordinary" short-sightedness at age 8 or 9 (in what would now be called Year 4 at primary school).
I come from a family where my mum, 3 grandparents, step-grandma, both aunts, at least one great-aunt all wre short-sighted and wore glasses. My dad got glasses later, and his dad fascinated my sister and I by having bifocals. So being diagnosed as needing them myself was not entirely surprising or unexpected, hoever much I dreaded the arrival of that day, nor reaction of other kids at school to anyone in NHS glasses (my dad, the one not to have experience of this, wouldn't pay for anything else, and made out years later he had no idea kids in NHS glasses got bullied at school - apparently honestly, though my mum and I gave him pretty short shrift! Bt I digress.)
SOme time during 3rd form at grammar school, I went for annual check-up at local opticians, from whom I'd got recent annual check ups and new specs.
New specs when they arrived seemed to be no better than the old pair, and I wasn't able to read the (green) blackboard as wel as I used tobe able to do - in first form, I'd said to teacher I was fin sitting inthe back row as long as I had my specs on' it was only without them I'd have had a problem. No more, though.
After a bit of this, my mum insisted I go back to the opticians - I think she went in to complain, and they made an appointment for me.
I went to this appointment with my dad (I dont' remember why), and went through all the usual stuff about covering one eye an dhow much of the chart can I read, and is this better or worse, and were any parts of the "hedgehog" thing further apart than others.
Then the optician (whose name I can't remember) sent me to sit in the waiting room, and talked to my dad about me).
Looking back, I think this was a bit off, but was used to being treated like that at that age, I suppose!
Optician told my dad I had this thing called keratoconus, and described the eyes under the effects of KC as being "like a lady who isn't wearing a bra". At least, that's what my dad said he'd said!
I can't remember whether the idea that people with this condition had to wear contact lenses came up then or later.
We then had to get the GP to refer us to the hospital. I have vague memories of being dragged off to the GPs (a team practice), and sitting in a room with a youngish GP who didn't want to know, didn't think there was a problem other than pushy parents, and had his feet up on the bottom drawer of his desk. I had a laminated card to read, with bits of text in various type sizes/faces.
At one point, this doctor said (admitted?? - under my parents' onslaught??) it was holding the card rather close, took hold of it and moved it further away, and asked me to read it like that. TO which I said "I can't read it at all there, it's jsut a blur" - which was stretching a point a little (!) but I was getting fed up by then. ANd only a little - I could probably have read at least some of it, with a struggle and screwing my eyes up (which my mum was always telling me not to do, too).
GP's face and attitude then changed markedly.
There then started a whole series of hospital appointments to which I got dragged off (all in office hours, so missing a lot of school, of course). I remember having to go to at least two hospitals, bcause the "normal" one didn't have all the right equipment. I don't know what all the various different bits of equipment were, or what they told us, and I don't remember getting offered any of this info.
I do remember a lot of days of spending hours sitting in hospital waiting rooms, all in dim, gloomy places where it was difficult to read a book, and when it was getting nearer to my turn, we got called to go round a corner and sit in an even darker, gloomier corridor - which movement seemed to serve no purpose at all, and the dimness struck me as just plain daft! - and remember, I was missing a lot of school, and trying to keep up as best I coul meant I often had my books with me and was trying to read them/do exercises in the waiting rooms.
Eventually, after I forget how many of these appointments, it transpired the next step was to be fitted with contact lenses, and I was referred to the contact lens specialist - a private optom contracted to fit lenses for the NHS via his opticians contact lens centre.
I forget at what point in this process it was revealed I'd have to be wearing contact lenses from now on.
This was exciting, as contacts were a pretty rare beast then - this was 1975 on Merseyside - and getting shot of having to wear glasses was great news too.
As we were a family with so many of us wearing glasses of one sort and another, this wasn't particularly traumatic. We were used to different people having to get different types of specs, so the idea of having to get contact lenses rather than things that sat on your nose was not taht far from just finding the right sort of specs (if you see what I mean).
It never occurred to me to wonder a) woudl I go blind b) what if the contacts didn't work c) what happened when the contacts no longer worked or anyting like that.
Maybe more things were said to my parents were said to me, or that my parents ever relayed to me. [Not to put too fne a point on it, it wouldn't surprise me; my parents have been known to be, errm, economical with the truth, thinking they were doing a kindness by sparing me hurt - needless to say, finding I'd been lied to, or getting the feeling they weren't being straight up with me, has always hurt far, far more than any amount of blunt bad news. PARENTS, PLEASE NOTE!]

The next stage was the appointment with the contact lens fitter - Keith Nelson, in Birkenhead, who I've mentioned on these fora before.
When we first went there, apart from beng impressed by him keeping pretty well to time, unlike the hospitals, who all seemed to make block bookings and keepyou there for hours, I also liked the atmosphere. There days, I'd analyse this as being essentially a commercial optician's practice who had to gain and keep their customers, and had to treat their customers as valued customers, and indeed human beings, unlike the health service who pushed us about like we were a nuisance, and got away with it because we had no option bt to patronise them. [MEH "system" still behaves like this!!]
There were a coupe were wanted contacts, for at least one of them, and had had some put it to try, and been sent out to walk round Hamilton Square for three-quarters of an hour "to see whether you can wear them".
Mr Nelson took one look at me, said "We won't send you to see if you can wear them, because you're going to have to, so we'll assume you can" and got on with it..... and I got the usual pink-fit first view of a scleral lens (we called them "haptic" lenses then) and very soon got to the point of having my eye balls moulded.

I don't know why, nor by whom, it was decided to put me straight into sclerals. I never objected at the time - I'd got the idea that *all* people with KC had to wear sclerals because the smaller, corneal, lenses "just didn't work" for KC. It came as quite a surprise to me, when I found the (then newly-forming) KC group, to find that several of its members were indeed wearing corneal lenses and doing well with them.

The prospect of a graft was not mentioned - at least to me - until I had the first hydrops, very early 1980. (I'd been to see Keith Nelson the previou day for a new lens fitting/checkup, had read *all* the Snellen chart with ease, and thought it a bit misty on the way home - then woken up with the world decided misty next morning,and my mum had rushed me straight back. He heard what I explained, took a look and said "YOu need to go to Mr Ainley" - who was the consultant ophthalmologist at the hospital - and explained what a hydrops was (except we called it oedema then.....) and that it might mean a graft, and that some peple got really good vision after a graft, and some didn't even need specs/lenses. Which was all rather hopeful, however daunting it was to be going back to college in two days and half the world was a white-out!
At the time I was being diagnosed and fitted with lenses, it was, thus, just a case of, get the right fitting and power of lenses, and build up tolerance times, and you'll be fine. Like getting the right new glasses every so often sorted my mum's short sight and astigmatism out.

My dad worked in the lab of a chemical manufacturing company, and had access tothe company library, with scientific reference books, and librarians who could do whatever library searches one could do in those days and order things not on site. He went and hunted for info on contact lenses (I've still got a load of pages of photocopies about (haptic) lenses and lens wetting solutions he found then) and I thinkhe also looked up KC - though what I was going to say about this earlier doesn't tally with my memory of, at my umpteenth appointment with Keith Nelson, asking "I hope this doesn't sound a silly question, but how do you spell this thing I've got?" and him having to think hard about this (clearly, the actually answer was "k c"!)
Thoughts on this:
First, we unkowningly hit gold dust in just happening to go to a local optician, in the early 70s in Liverpool commuter suburbs) who just happened to know about KC, and to recognise it.
Secondly, I do think I was lucky in being in the right place at the right time to get referred to Keith Nelson - who was not only a pleasure to visit, and could often fit us in late afternoon so minimise missing school, but achieved a better combination of comfort and vision than MEH have ever done, rapidly accepted I was an "oddity" to whom the textbook approach tothe balance of comfort, vsion and theoretical good fit jsut didn't work, and invented something called the "J curve" - named after me, because mine were the first lenses he used them on. [To be fair to MEH, by the time they had to deal with me there'd mean several more years of disease progression and two hydrops to complicate the situation.]
Thirdly - and an issue not only affecting young people developing KC - it is also very lucky I was a bright kid and top of the class in most subjects anyway, as otherwise I don't think my education would ever have recovered from the effects of a sudden and rapid deterioration in eyesight and missing so much school for various doctors, hospital and lens-fitting appointments. The latter were sometimes possible to schedule after school but the others all had to be working hours, and the appointment systems laughable inthe hours we had to wait around.
Reading this thread makes it appear very lucky I was in a position to regard KC as "the reason your new glasses aren't right" and something that would be dealt with by a different type of correction (lenses) rather than as something out of the blue.
I think I did, at the time, get pretty fed up at being herded about and treated as an idiot rather than an intelligent human being, albeit a small one. Looking back I'd be even more furious now at being hauled in and out to be examined and then shunted out and people talked to my parents not me. Is this a sign of passing time??
[I remember being most taken that Keith Nelson called my mother "Ann" and me "Miss Johnson" - at age 14 or thereabouts!]

Hope this helps - let me know if you'd like any more info.
ROsemary

[Lynn White]

Phew that was an essay and a half!

All of this is very interesting indeed.

What I have noticed is that most of you had no reall inkling there was anything wrong apart from glasses not working.

You all do know however, with the value of hindsight, that various symptoms arise from KC like glare problems, difficulty with light levels, flare around lights and so on. I know from my own patients that often these symptoms are thought of as fairly "normal" because they come on gradually and you can't really compare with "normal vision.

So do any of you now realise that certain symptoms you were experiencing were actully due to KC? This could be useful to pass onto people learning to recognise KC in giving them something they can ask about.

Lynn

[Andrew MacLean]

Lynn

I used to keep asking in school if I could be moved to a less bright part of the classroom. I'd sit there in the glare that came through the window and be told off for ribbing my eyes.

I don't remember ever being allowed to move.

Had i known then that both eye rubbing and sensitivity to bright light were indicators of KC I'd have been more insistent on my need to move, but you just don't think about these things when you are young.

Andrew