UK Keratoconus Self-Help and Support Association

Hi everyone...

After reading some of the posts here (like Susan's) and the total frustration many of you have with work and just getting friends and relatives to understand, I decided to surf around to try and find a decent information leaflet to explain KC simply but effectively...

There may be one out there but I have rapidly decided that it is easier to write one from scratch. I know this has probably been talked about before but I thought it would be a good idea for everyone to voice their particular "grrrr" factor and to suggest ideas... I know people have mentioned things before about computers and so on... but perhaps if it was all in one thread, it would be easier to access...

I'll then try and put this all together and see if it makes sense to ordinary people.... you could perhaps try it out on people you know??

Let me know if this has been done before though!

Lynn

Lynn

Sounds like a really good idea to me!! Even though i work in a hospital most of the doctors have no idea either, so it would be really helpful!

Can't wait to read it!!

Claire X

Hi Lynn,

Can I say what you do on here is fantastic..it is sometime reasurring just to know that an eye professional is on-board and realises how KC can affect an individuals life!

Anyway..back to the original post. I have a leaflet here that I was given by Sunderland Eye Infirmary wrote by Mr Morgan there.

I could scan and e-mail it to you if that would help?

Cheers,

Dave.

Hi

I think thats a good idea. Whilst there may be some that exist, the ones I have seen have all come from a Patient "What to do" perspective.

A few ideas

1)A simple diagram of Eye, one with KC one without
2) Why we cant "Just" wear Glasses
3) A picture showing what a normal person sees and what a person with KC sees. This can be patient specific but a general picture enfrcing the blurryness
4) KC will not make us blind directly, our vision just gets distorted over time
5) Why we may need to take lenses out for a small period during the day?
6) Why we may need to get through about 5 CL visits before we get a good fit (Cone and irregular shape of Cornea)
7) Maybe something on causes
How some sufferers may take days off as "sick" and literraly cannot work due to no vision by way of wearable lenses
9) The frustration of a sufferer when being seen by a practice which doesnt understand that without lenses many can not see or function and thus cannot work.
10) Effects on some KC sufferers phycically, red eyes, squinting, blinking, eye drops,
11) Air conditioning at work and how it doesnt help a CL wearer, with or without KC
12) This one I think is imortant, Priate Health Cover....but Im not sure if this is within your remit and from just rereading your reasons for doing this, this may be something for another document

Theres other ideas I had but i think there out of scope of what you are aiming to do here

Again, a very good suggestion and thanks for all the work you do on this board and your opinions

Thanks Dave!!

Yep - that would be very helpful!

I do want feedback from you all though... like...

Lighting levels and photophobia at work..

Bigger print

ooppss!! I have just seen jayuk posting and yes the "why can't you just wear glasses" issue! How many of you get that query??

Any issue you have to explain over and over again to people...

Lynn

Lynne,

I have already made a start on this, I have a power point presentaion that I sent to Anne Keplatz a while back and now have an updated one. The presentation has been given to the people I have the most dealings with and on the whole has worked pretty well with getting people to be more understanding so the problems I have are usually a lapse in concentration when I am asked to look at something by someone in a blind panic!

The first presentation was to the site doctor and occupational health nurse who new nothing about KC but were technically minded. This first draft was re-jigged to make it easier for work collegues and gets tweeked each time to make it more user friendly to the lay person. For the midlands KC group, I have been asked in the autumn to give a presentation on copeing strategies that I use and those I have learnt from people putting posts here when helping each other out and in answer to some of my questions.

I would like to have something together in June for the supprot group confrence so that if my name is down early enough, I can perhaps discuss some of what I have so the group can produce another leaflet.

Not done much with it for the past few months while I organise a car show to cater for over 6000 people and cars this coming Sunday, but after that I get some of my life back and will have the time to work on it some more.

Gareth

Jayuk..

Private health cover is indeed very important and something I was involved in looking at in Trinidad. Nearly all patients had work related private cover, but many insurance companies regarded CL's as cosmetic - not an essential. I wrote to many to explain the difference and won some, lost some... but its definitely one that needs addressing here as well!

Thanks a lot for your list - obviously many frustrations there!!

Lynn

Lynn

In that case I can give you my experience and the work arounds (legally), the companies to choose, what to say, what not to say, etc.

Let me know if this is the kind of stuff within PHI you wish to potentally cover.

Lynne,

I have already made a start on this, I have a power point presentaion that I sent to Anne Keplatz a while back and now have an updated one. The presentation has been given to the people I have the most dealings with and on the whole has worked pretty well with getting people to be more understanding so the problems I have are usually a lapse in concentration when I am asked to look at something by someone in a blind panic!

The first presentation was to the site doctor and occupational health nurse who new nothing about KC but were technically minded. This first draft was re-jigged to make it easier for work collegues and gets tweeked each time to make it more user friendly to the lay person. For the midlands KC group, I have been asked in the autumn to give a presentation on copeing strategies that I use and those I have learnt from people putting posts here when helping each other out and in answer to some of my questions.

I would like to have something together in June for the supprot group confrence so that if my name is down early enough, I can perhaps discuss some of what I have so the group can produce another leaflet.

Not done much with it for the past few months while I organise a car show to cater for over 6000 people and cars this coming Sunday, but after that I get some of my life back and will have the time to work on it some more.

Gareth

Fast and furious here...

Jayuk... yes thats a great idea.... I would appreciate it...

Gareth...

How did I guess you would have done this already!!

Sounds like you have material for about three levels of leaflets...

I don't want to step on any toes here... as you have already given the info to Anne and I do know from talking to her that she is working on something for employers I think??

What I was thinking of for the interim is putting something together that could be downloaded in pdf format that people could print off for themsleves and show others? This takes away the immediate hassle of printing and distribution and could be piloted until we get the right balance?

I have been trying to so something like this for a while now and reading posts here showed me that I should stop thinking and do it.

I would ideally like to look at your information but appreciate you have your own ideas for it...particularly if you have any decent royalty free pictures as these are always a pain to organise?

Lynn