Researching a KC article...

[brigid downing]

For most of my teenage years I thought I was just odd that I found sunlight so difficult. Everyone else wanted to sit in the sun - on the rare occaisions that we had any - while I wanted to sit in the shade or go inside close the curtains!

I also thought that lights and stars just did have halos around them - especially as that is how artists often depict them. Shortly after getting my contact lenses I looked up one night and nearly screamed that the stars had changed to pin points.


My biggest reverlation though was discovering that I was not clumsy - i just could not see, I think for years!! I gave up on ball sports and anything that required hand eye co-ordination by the time I was 16.

Brigid

[Lia Williams]

Lynn,

Looking back I think there could be two things that could be due to KC rather than shortsightedness that I originally had.
Firstly as my eyes got worse the images used to separate rather than become softly focussed. This was only noticeable when reading the blackboard when the writing appeared to have little lines on the top of them. Although I guess this type of vision woukd also occur in astigmatism.
Secondly when I first started to wear contact lenses (for vanity in those days) I noticed that I needed sunglasses when the sun was strong - this I assumed was something to do with wearing contact lenses rather than any eye problem as I had not needed them with my glasses.

Lia

[GarethB]

I think when looking at white boards an the TV things would look smudged!

The outline of these objects was sharp, but the white or the TV picture would be smudged and down and to the right whcih I gues was to do with some of the astigmatism. Light was not a problem then, if anything I needed more light except where surfaces reflected a lot. This reflection is probably why I would find some colours hard to see on a white board.

Now light is an issue, but since getting decent elns wear I can tolerate loads better. Uncorrected light is also no problem. Just everything has a smudged effect and street lights have large stra lines coming off them.

[Prue B]

For me it was not a gradual loss of sight. I started studying nursing in the Feb after year 12 in the December I had a check up including a vision test. I was 6/6 this was not a suprise my vision was and always had been excellent. In the March a friend at uni asked if I saw ok cause I was squinting a lot. I told him I was fine at that stage I was sitting in the second last row in the lecture theatre, in the next 3 weeks I was battling to see in the first row and aware of my sqinting, I made an appointment to see the optometrist at home over Easter break late march, my friends all had optometrist appointments they could not make they offered me in the meantime, but I told them I would go over break which I did. I could not read the 3rd line on the chart at all and the second I had to squint to see. This was 3 or 4 months after the drs visit. When I explained my symptoms the optometrist said you are probably just a bit, no I will examine you first. Should not make diagnosis before examinations. Well he examined me then rang my mother to pick me up and said he wanted to discuss his findings with both of us. He diagnosed KC, told me my glasses would make a difference but I would need hard contact lenses, it could lead to blindness which could be fixed with corneal grafts. That part was fine. I was given a referral to a contact lens fitter. I had to travel to Melbourne my appointment was at 1am I had to catch a 5pm train to Warrnambool. I was finally seen at 4pm they rushed me through said they had a perfect fit. When they arrived they kept slipping of and adhering to my eyeball. It was hell getting them out. I had read suction marks. As well as that I could not see further than a foot in front of me. Up to 12 inches was as clear as a bell any further than that was a foggy haze. This concerned me as I lived on the 3rd floor and was scared of falling down the stairs. They also popped out. I could get them in but on 2 occasions had to go down to casualty to have them removed. I never got past an hour. A few weeks later I was back for a check up. Apparently they were a perfect fit and the suction issue was something I would have to deal with, and the fact I could see a foot was a great thing and i should "wear them for social use". I was never able to get lenses that worked in my eye and believe quite strongly that it was the fact that the first pair were so poorly fitted. It was my opinion that my eyes were hypersensitive to lenses as a result of the month of torture they recieved.
I persevered with glasses, along the way tried great big lenses (sclerals) and piggy back as well as soft all with no success. In the end with glasses I was walking in front of cars and needed grafts.
I have been fortunate, my diagnosis although a shock was caring and considerate, I have a great optometrist and opthalmologist and a good surgical outcome. The only problem I had was the original lens fitters.

[rosemary johnson]

Lynn asked if there were symptoms present around diagnosis time (or earlier) which were indicative of KC though we didn't know them at the time:
in my case..... either probably not, or else, if they were, I wouldn't have recognised them.

I wasn't getting hypersensitivity to light until I got the lenses, and found I needed sunglasses much more. I had sunglasses for particulalry bright days anyway - all the family did. I still find bright light more of a problem when I have the lenses in. THat's now EVEN more of a problem.
Double vision - well, yes, I was seeing things in multiple ghost images! - but I hadn't realised that, and hadn't twigged that was my problem, so if the optician had asked, I'd just have looked blank.
[My dad was trying to get me interested in photography - he was a keen photofrapher, and did all his own processing, and we all loved helping in the darkroom. He got a new camera which you focused by adjusting until the two images were on top of each other. Need I say, I just couldn't tell?! I think my mum thought I was messing about, saying I wanted to take photos and then claiming I couldn't tell if it was in focus. But I hadn't realised the reason I couldn't tell when these two images coincided awas because I was seeing 6 images of everything anyway!]
Stars/haloes round lights: I don't remember noticing that then
Rubbing my eyes a lot: well, I never thought I rubbed my eyes more than anyone else! - but my mum always told me off if I did, so I'd have said "no" if the optician asked me - or maybe something like "NO more than most people" (and my mum would probably have said I didn, and told me off later!) I still don't think I rubbed my eyes that much...

What else? - well, finding it hard to read the black board, reading books, etc from closer and closer.... and finding it hard to read sheet music - probably because the double images went up and down and resulted in each stave having at least 7 lines unless I got too close to the page to have the instrument in between! But again, I hadn't realised it was a double-images problem.
Dry eyes: no. Sticky eyes: no. Headaches: sometimes. But so what? DOn't we all? And my mum and sister get headaches if they need new specs.

I think there is another point here, at least in my case, that might affect more people than me. And this leads on from the eye rubbing point above.

My parents - maybe thinking that with so many glasses-wearers in the family, their children were likely to grow up to need glasses too, were keeping a close eye on us and how well we could or couldn't see.
But unfortunately for all concerned, the way they did was was such as to leave the distinct impression that not being able to see perfectly was on a par with being regarded as bad, and going to get told off.
No doubt this was also linked with the dread of the day when I'd have to turn up at school in NHS glasses. Or any glasses, for that matter!
All of which led to me being as evasive as possible about what i might not be able to see, and as many coping strategies as possible to escape this close eye being kept on us, or to parents having any evidence..... etc/
It also meant, when the dread day came that the regular and obligatory and pre-Tory govt health check-ups at primary school decided I had less than 20-20 vision, and eant I got referred to a children's eye clinic [Card: "To the parents of Rosemary Johnson, Please bring this child to...." - I was sufficiently pissed-off at the patronising gittery of this to overcome the expectation of being shouted at again to hold forth to my mum with what I thought of this!] ..
When that day came, I suppose all the dread, the hatred of the idea of having to go round in glasses, got transferred to a hatred of the optician. And I must have been a very uncooperativ parent.
Needless to say, I also gat told off for being so rude (!) which only made matters worse.
It's amazing, actually, that the opticians - my parents later gave up this clinic and started taking me to the optician that had newly open in "the village" near us, after she'd started getting her own specs there (before, she'd still gone to the place near where she used to work, but that was miles away)
...... amazing if not incredible that the actually managed to make me glasses that actually did any good.
For example - I remember on one appointment, being asked to look at the "hedgehog" display on the wall, and say if any part of it was clearer than others.
I knew what these hedgehog things were - and even understood the word "astigmatism" - if only as "something that makes the hedgehog look uneven".
But I was absolutely horrified to discover that one part did - because I thought this meant I was going to be assessed as having done something wrong again and to mean I was about to get into trouble yet again.
So I did my best to look blank and say "no" in the sort of voice of someone who'd no idea why a hedgehog should look uneven. And I remember the optician pausing slightly as if surprised at my answer. And then going on and not saying anything.
[Incidentally, I also had one particular primary school teacher whose reaction to seeing me crewing up my eyes to read the board only reinforced the sensation that having imperfect eyesight and having to wear glasses was a terrible humiliation.]
It wasn't until I'd become something of mini celebrity, for having a rare and exotic condition, needing a glamorous strategy (we didn't know anyone else who had contacts in those days; they were far rarer than now) that this started to go away - and indeed, with all the being herded about, pushed around andtreated as a brainless .. whatever... by the various hospitals, it wasn't really till I met Keith Nelson that any eye specialist got in me a cooperative willing partner in a joint KC management approach.

I don't know how many other young people developing KC this may apply to, particularly these days. I hope that many things have changed for the better. But maybe there are elements of this that anyone involved with - if not "diagnosis" at least recognition, might bear in mind?
More generally, for those of any age, maybe it would be easier to take the news of a rare condition if they can be a bit of a celebrity for being rare, unusual, not yer ornary common or garden...... rather than the poor sod who's drawn the really short straw of rotten luck?

Another thing I've touched on above is "patient empowerment" - and putting someone with KC into the position of managing their own condition - because, after all, they are *our* eyes that have KC, and *our* lives we have to lead around it.
The health services in general have gone a long way fown the road to recognition of this, and what it means - even ig not as far as we'd like, always - thanks (??!) to the AIDS epidemic (which faced the health professionals with a mainly young, articulate, very well informed, and often very politically-involved group of people infected with a virus to which they had absolutely no medical answers, at least in its earlier days).
I don't know what professional education/training/CPD covers in this field, Lynn, nor what the general attitude (or whatever) is in the professional ranks of eye-care pros (changed a lot since I was first diagnosed, I hope!)
is it possible to raise this in any paper on diagnosis/recognition? - that it is a condition that the person-with-KC will have to manage for themselves. The pros can't "wave a magic wand", tell the patinet to do X and all will be well (in the old way of looking at doctors). And that management approach will only work if it is the person's approach - if they say it isn't working/hurts/they're better off without these lenses than with them, it's NBG trying to make scientific wow=papers of them if it doesn't benefit the person's ability to get on with their life.
[Unfortunately, I think some of the medical professional are still guilty of the latter! - or of trying to get marginal improvements that only make a difference in hospital notes - eg. someone who doesn't care if the hospital can get 6/24 rather than 6/36 for 5 hourse rather than 3 if they still can't do their job, and would rather have a P/S registration number so they can train to use a talking computer.
Sorry that this is (no doubt!0 a big subject for a short (ish) paper, but maybe you, with insider experience, can put in something appropriate, matched to the concext of the readership?

Incidentally, how about this as approach to the subject of whether someone needs to be told? - does having a "name" help person's ability to manae their condition? For someone mature, settled and coping OK with ordinary contacts, probably not. OTOH, for someone younger, starting out on a career/college course and likely to move around, a name they can take with with them and bring up if problems arise may short-circuit long sagas in future?

SOrry for long ramble! Should explain I can only see 35 characters of current para at a time as I type, and first 35 chaars of previous few - so impossible to know how long I've rabbited for, and v hard to remember how paragraph started by middle of it - so sorry if grammar seems to go astray in middle!
Rosemary

[Lynn White]

Rosemary..

Many points here as included a great deal!!

Let me say first of all that your problems with admitting you couldn't see actually relate generally to wearing glaasses at the time you were a kid. I had much the same reaction myself coming from a high myope family and at that time there was great stigma attached to wearing glasses full stop. I went into contacts at 13 sheerly becasue I hated glasses and yes, there was kudos in that too !

Nowadays, glasses are cool and I spend much more time trying to weed out those kids who are pretending to have vision probs so they can get stylish specs than I do trying to detect actual poor vision being covered up! Such is the nature of changing times.

Now about KC being in the control of patients themsleves. This is as much about KC being a "hospital" condition as much as anything else. The modern health service is all about getting people out of the hospitals and into community care where patients have more choice and say in where they go and how they manage their condition. Its actually ironic that high street optometry which contracts out to the NHS is already an excellent model of how this works - but unfortunately, KC is so specialised that it gets harder and harder each year to find people on the high street who are experienced enough to work with KC'ers.

I was going to include "listening to the patient" anyway Rosemary, as if there is anything I have learnt on these boards since I have been here is that people get frustrated when practitioners say "But its a perfect looking fit!" or "Well it SHOULD work!" rather than looking at how their patients lives are affected by short wearing times because lenses hurt. What is needed here is understanding of lifestyle rather than simply fitting techniques. And again, that is often better handled in a normal opticians than in a busy hospital department, as that is what opticians do - prescribe to suit a persons lifestyle.

Which brings me to just put a note in here that many who have replied here were diagnosed years ago. Does this mean that generally diagnosis is better handled now or that the older members are less shy in talking about it? I'd like to hear from a few more recently disgnosed if possible?

Also would people actively prefer to be seen in a high steet environment or do they prefer the hospital environment? This is assuming you could get the same standard of care in each place of course. If thre is enough interest in this I may well do a poll!

Thank you all again for your continued input!

Lynn

[GarethB]

Who watched UK Documentary last night about the guy who learned to see?

Basically he lost his sight 43 years ago as a young child and grew up as a blind person. He has now had a corneal graft with stemcell treatment too and can see.

The post will be too long if I write all that went on but he concluded at the end that when faced with changes in sight you MUST EMBRACE BLINDNESS AS YOU DO THE GIFT OF SIGHT.

If you learn to deal with both in a positive manner then making the change from the sighted world to unsighted has no change on our quality of life.

Oh and this guy while blind was the paralymic down hill skiing champion!

[Lia Williams]

Lynn,

If I could be seen on the High Street it would save me time treking up to London and seeing a different person each time.

I used to be seen on the high street by an independent optician who spent ages with me sorting out the perfect pair of lenses. I was on of his challenges! However I always felt sorry for the individuals whose appointments were after mine - mine usually overran.

When I moved house I found an expert on the high street (he also worked in the local hospital). I thought I'd struck lucky. Unfortunately he was unable to fit me as he did not have enough fitting sets to find the perfect lenses.

So now I go to MEH. I need to allow two hours to get there, appointments sometimes run late and take ages, on other occasions a check-up has taken 5 minutes and I've been seen early. I'm not complaining - they really cannot predict how long an individual's appoinment can take.

In conclusion, if I could be seen on the High Street I would be happy to be seen there. But for people like me whose KC is not mild (although I'm not a difficult case for MEH) I can quite understand that High Street opticians cannot afford to see us.


Lia

[Anne B]

I first started to notice my eyesight change after the birth of my first child in 1998. I went to a local optician who told me i had a astigmatism and that i may need regular prescription changes. My atopic conjuctivitus was bad at the time so he sent me to my GP to get a referal to a eye hospital.

I was sent to Moorfields in 2000 (i think) were i saw lots of different people about my atopic condition( nothing was ever mentioned about my eyesight getting worse. )I went to Moorfields a few times and was given lots of eyedrops to try. Nothing seemed to help. I went one time and someone was rude to me so i decided not to go back.

I then tried not to worry about my eyesight and started on the guilt trip that i was causing my eyesight to deteriate by rubbing them(but i couldn't stop)
In 2003 i went to a new optician because i just couldn't see a thing and the glasses i had did not help at all. she sent me back to my GP, who sent me to my local hospital.

On my first visit they diagnosed KC and told me it was a coneing of the cornea and the best thing they told me, was that i wasn't going blind .
They tried all sorts of lenses over the next few months but my eyes were to sore. So my consultant (Mr Toma) refered me back to Moorfields and to Mr Dart.

And thats where i am now. My consultant and the optom at my local hospital were great and really put me at ease.
I think i went undiagnoised for a few years which if i had known i would had dealt with the situation better. and i wouldn't of blamed myself for so long!! It seems so silly now to off blamed myself but because i had been to Moorfields and they found nothing wrong i had no where to turn.

Hope this makes sense and that it may help.

All the best with your study
Anne

[Louise Pembroke]

"If you learn to deal with both in a positive manner then making the change from the sighted world to unsighted has no change on our quality of life."

I admire those who can take that positive stance but I couldn't. If I were partially sighted or blind all the time I'd rather be dead, sorry.