Compiling info for an information leaflet...

[Sweet]

Not really sure what to put here, been having a deep think on it.

I guess i didn't tell my employer not because i didn't want to but because i kinda thought well i have put up with this for so long and it is my problem so i just deal with it. I know that that sounds like such a martyr but i guess i have come to the conclusion that even if they know, what can they do? I work in A and E and yet when i was really suffering last week in pain the doctors there couldn't help me either so really what was the point?

I guess i know deep down that i am ok as i work in the NHS and as mentioned before i can phone in sick and they can get agency nurses to replace me, but this still doesn't change anything. I wake up in the morning with the fear of being in pain and knowing that i have to struggle with lenses again and somehow make it through the day, but after 12 years i just accept it and try not to get bogged down with it. It's only when i can't take anymore which is the third time in two years and i have had to call in sick because of it that i get depressed.

I think that having a leaflet is a great idea. I am tired of having people ask me why my eye is red and i look tired, but after explaining i still get it only with pity so i wonder if there was a point in trying to say anything? I know being a nurse that there are so many diseases that affect people, take the insulin dependent diabetic for example. True they won't be off sick because they can't see but then having to inject yourself every day is just as much of a hurdle as mine is. Having the very real risk of hypos and coma is very concerning and i wonder how many tell those they work with. Maybe their boss granted but not all the people they spend their working day with.

I just feel really relieved to be able to come here and share and not feel so alone with this. I feel that i am getting somewhere in waiting for scleral lenses and finding out information on KC. Maybe i am just tired of the whole thing, but after being in pain so long and turning up in eye casualty more than a few times and being told by specialists there that there is nothing they can do except for me to take my lens out, i have just learnt to deal with it. If my consultant can't suggest anything while waiting for lenses who else can?

Sorry to vent, hoping everyone is more positive!!

Claire X x X

[Sajeev]

Hi Claire,

I think with KC there is different degrees to to it...

With coping with it and how you get on in daily life...and of course that can dramatically change from time to time...

I think there are many in your shoes and we need to help people out in your situation as well when it comes to work/other related issues.

I think we should try to define this grey area that exists in KC...but it is a tough, tough job and we need people who have the calibre to manage this worth-while project so that it is inclusive of everyones concerns!

Boy...thats tough!...but its a worth-while challange that can make a differance for us!

I think the uk is leading the way here!

Sajeev

[GarethB]

I have always told my employers about my KC, even the 18 year period I just wore glasses after teh graft. Never had a problem and never had to explain it until now when I had to get sorted with lenses due to KC returning to the old cornea and distorting the graft.

What I have prepared so far is pretty much from the student one, however the changes are in what is out there to help us and our employers. I say this because there is much we can do to help our selves in that how we compensate at home can be translated to the work place. However changes to a building are harder at work, in some cases an extra light may not be a desk light. For me I am light sensative, so work allowed me time when I returned to find out what my limitations were so that using literature from the HSE regarding VDU usage could be applied.

For me this is a 19" flat screen monitor with its own red/green/blue control, anti reflective surfaces on the desk and a change of location. To read documents the photocopier now has the facility to enlarge upto A3 permanently installed and I have coloure film to put over handouts that are in black and white.

Will add more later, must go and collect my daughter.

Gareth

[John Smith]

Hi Gareth,

To read documents the photocopier now has the facility to enlarge upto A3 permanently installed and I have colour film to put over handouts that are in black and white.

I'm interested about the colour film over b/w copies - how does that help you? Is it purely with contrast reduction, and less glare, or is there a reduction of ghosting... or something else?

[GarethB]

Hi John,

For me it is a change in contrast frm black on white which I find quite harsh, but something with a blue/green tint just takes the edge of it. I get the same affect on the pc changing the red:green:blue ratio and found that eye strain is much reduced so improving my lens wear time. It was the occupational health nurse atwork who had the idea to help while I waited for the correct tint of sunglasses to be made.

The correct film tint was found by accident at my local car accesory shop which has different tints on the windows to show car glass tinting and I could read the adverts behind the tint easier than the ones thet were not!

Can not guarentee it will work for all as I am used to being unique.

Gareth

[John Smith]

Just goes to prove that there is such a thing as serendipity!

Glad you found the right colour - however accidental!

[GarethB]

I would recomend to anyone who needs a large monitor to try some out at their local pc shop and see which have the red:green:bue adjustment and find the right colour/shade that is best. This can then be applied to glasses and other things to reduce light sensitivity. That way selection would not be quite so accidental as it was for me.

I am just finding now that the dark glasses I have now are not dark enough for sunlight so the search is now on for a suitably dark tint for outdoor summer use!

[shamsa]

Hi everyone

i have been recently diagnosed and im currently studying for my alevels as part of my english coursework i have decided to write a leaflet for teenagers with KC .

if you have any ideas or thoughts that could help with the productyiopn of my leaflet please feel free to post them, I also really like the idea of a leaflet to help people understand what it feels like to actually have KC and not just to think we are looking for sympathy or attention.

[Lynn White]

I think this is an excellent idea! Teenagers have different concerns and priorities than adults and this could be very useful to give to teachers and schools when a teenager has been diagnosed. There is a leaflet on this site already concerning students http://www.keratoconus-group.org.uk/pub ... aflet.html but I think yours would be a good supplement to that.

I do have a lot of information by sheer dint of experience on how teenagers cope with KC, so would be happy to chat with you about it. And of course, this thread itself gives a lot of very useful information. In the end, I used this information for lecture purposes rather than an actual leaflet, so I am really pleased you are doing this project.

[Andrew MacLean]

I was once a teenager with Keratoconus. The best advice anyone could have given me would have been written in large friendly letters that would have spelt the words

Don't Panic

Once that had been established, the more earnest advice that you want to give could be incorporated.

Andrew