Compiling info for an information leaflet...

[Sweet]

I habe never mentioned it in an interview or on a medical form except to occupational health when i was in pain with my lenses and needed time off work. I dont mention it as i don't see it as a disability as such, just as i guess others wear glasses and lenses for different reasons! Maybe this is because apart from my twin sister i didn't know anyone else with it until i came here.

Being really silly here, but where is the front page and the leaflet you are talking about? As the link to the home page above doesn't work. Sorry to seem really blonde here (hehe but i am ... blonde that is! not silly!!!)

Thanks Claire X

[Lynn White]

ummm...

Thou art not being blonde Claire.. (as a fellow blonde) verily, the recalcitrant link dost not work (as I reported in the relevant section on the boards...)

go to

http://www.keratoconus-group.org.uk/index.html

and thou shalt find the link thou wast searching for!

[Lynn White]

errmmm...

back on topic...

See?? No-one goes and tells an employer.. do you??

So just WHAT do you really want them to know...???

Lynn

[Sweet]

I don't really know. Maybe why i can't wear glasses and how sometimes i am in too much pain to wear lenses and can't see without them would be a start.

Since being in pain i have told my boss and she is very understanding though i don't think she really knows about it, but as you said i guess that is because we don't say anything!!!

Claire X x X

[GarethB]

When I was first diagnosed with KC I needed extra light to see properly. One the grafts were done all as OK until the olde cornea started pulling the graft out of shape, now everything is too bright!

I think it depends on where the distortion is as to the effect the random light scattering we get without correction hits the retina. My understanding of sensors in the eye changes depending where you look on the retina and perhaps some of these sensors/nerves become hypersensitive if they are over stimulated or reduce in sensitivity if understimulated. Therefore some of us become sensistive to light levels be it too bright or dark.

A theory perhaps that requiers further refining?

Gareth

[Lynn White]

OK... a quick resume of photophobia or sensitivity to light...

The cornea is the most sensitive part of the body because it has more sensory nerves than anywhere else.

Now, when these nerves are under stimulation - which they are in keratoconus - then light gets translated into pain. This is why you can't stand the light when you have an infection etc..

Then you have the problem of blurring... if you are looking at a bright light with an unfocused eye, then huge amounts of light enter the eye and get directed to areas of the retina in a disorganised way... the retina works by receptors initiating a chemical reaction in response to light hitting them.This then results in an electrical transmission of info across nerve synapses...

A big blast of unfocused light confuses the entire system! Receptors are firing off impulses all over the place and teh brain cannot make sense of it.. another cause of sensitivity to light.

If you NEED light to see, then you usually are requiring enhanced contrast.. another problem entirely, often caused by distortion of teh cornea

The visual system is actually quite complicated!

Lynn

[Paul Morgan]

I can't disgree with anything I have read on this thread. Well done to everyone.

i'd like a leaflet to deal with the emotional side of KC though. How it can feel when you find out you have it, the fear, the frustration, the uncertainty, the anger, the disbelief and all of the things that we have all felt and been through.

I'd also like it to deal with the day to day things that a KC'er has to put up with. Things like not being able to pick up a paper and read without lenses, in a shop - struggling to read the labels on tins, and clothing labels and all that, whereas a 'normally' sighted person takes these things as well...so normal. Ha...I was buying shoes for my little girl the other day, I was giving my lenses a rest (they work so hard) and nearly came home with size 9 and not 8. that's the sort of thing I'd like to get across.

I guess I'd just like it to cover how difficult a day to day life with KC can be!

You see with all that in it...I'd have every excuse for being grumpy old sod round the office whenever I wanted!!

[Lynn White]

OK..

I actually did miss seeing the post by Mike earlier on as there was so many posts at the same time! He makes some valid points - not least that there are already quite a few leaflets around already.

Anne has also emailed the one that is in preparation...

Having read the many posts here... I would say that what you all want is not really one for employers... but one to give your friends and relatives... to get them to understand you.

This might sound a little harsh... but what you are mainly expressing here is a sort of under your breath... "I wish they (your employers) could just be in my shoes one single day and see if they like being keratoconic...!!)"

As I said before... you have to see it from an employers point of view as well. Imagine if you will...

You own a small company employing say ten people. You advertise for the post of accountant, interview everyone and come up with a really good candidate. This person is going to be it as far as an accounts department is concerned. No assistants - just one man and his computer.

The person says nothing about any eyesight problem at the interview. Then, one day, the accountant pops into your office and tells you that he is going to have to have a few weeks off because he has hydrops...

Not only that - he presents you with a leaflet that explains his condition that mentions time off for lens fittings, problems seeing a computer, difficulties with air conditioning, heating, photophobia - the list goes on.

You have to get the staff salaries out in two days time, the VAT man is due for an inspection and you have your end of year accounts to sort within three weeks... employment legislation requires you to give time off for employee disability - but you cannot cope without him and you have no idea when he is coming back... and he didn't tell you about this potential disability when you interviewed him.

Whats worse, it looks from the leaflet like this could be an incredibly bad ongoing problem...

HELP!

Its a thorny problem isn't it? No-one here has yet admitted to telling a prospective employer up front that they have KC. It then becomes very difficult to suddenly present your employer with a list of somewhat worrying symptoms and indications that you may be requiring a lot of time off..

I think this has to be a delicate balance.. think - if you really put it on the line about your KC, you may well jeopardise promotion. Although we have laws about disablity in the UK, KC is a difficult one to categorise as a disability. After all... you can't be registered partially sighted when you have perfectly good vision with contacts... its almost as if KC is a part time disability.

What do others think?

Lynn

[Susan Mason]

Lynn

What you are saying is right and I am sure that none of us expect our employers to pay us or keep our jobs open just out of the goodness of their hearts however, when you have told them and been assessed by everyone they asked you to see, poked all morning at St Pauls eye hospital in Liverpool, as well as seeing your own people every 4 weeks, it gets a little much.
Especally when your computer that they say is fine as THEY can see it still does not work and everyone who passes your desk asks @Is sky sports on yet?' then when you get to school to pick up your child you can't pisk him out of the group.

Along with all the comments about ' put your glasses on' 'pull yourself together' etc etc.

I wont go on as it will get silly however after several months of this even the strongest of us have issues, I still can't tell you what my little own looked like in his first nativity unless I look at a photo.

Doom and Gloom set in and depression and anti-depressants follow.

Anyway, I will speak to you soon.

Susan

PS And yes this is extreme however if they push for long enough they hope to get what they want.

[Sajeev]

I don't think no-one should lie in an interview...sorry to sound like Mr goody two shoes here!...there are so many things like work place insurane and safty issues that can come in to play...

However if you feel that your KC will not get in the way of your job...then great don't tell your employer!

But I am worried about people who do need to explain it to their employers (before or after employment)

A simply worded leaflet about KC...maybe one tageted for employers....and another one for family and friends...

In the leaflet for employers...it can quote regulation which the emloyer should follow...(Including harrasment regulation..lolol and empolyment laws including help with disabilities like helpful extras for the use with computers ect)

and on the friends and family one...it can be more light hearted...

I think something on paper..once you give it someone...makes more sense as most of the time...like myself...I just don't know where to begin explaining it all..!!

All the Best