Compiling info for an information leaflet...

[Sweet]

Hey there been reading here and it seems that there are loads of ideas!!

Hehe, i just need to let you know that i HAVEN'T been putting anything together lately LOL! Hehe sorry but that just made me smile, because there is no reason as you know why i would be!!! But it looks like a load of you are doing lots of work!!!

I just have to second the typical glasses issue and also air conditioning as we have to have that in resus but it dries my lenses out no end. I don't seem to have the same problem as some of you with lights though, i actually need a lot of light to see, and without it even with lenses i can't see well. This is really bad on nights when we turn the lights down! I only have trouble when my lenses are hurting to look at lights, but i do understand then what you mean.

It would be good though as already said to put over the point of sometimes having to have days off 'sick' as this is the problem i already have. It would just make it easier on everyone if our employers understood.

Thanks for all of your hard work!

Claire X

[Lynn White]

Hi Claire!!

Yeah I know.. all sounds a bit frenetic doesn't it??

My problem is impatience. I admit I am a fully paid up member of the never leave till tomorrow that you can achieve today by burning the midnight oil brigade!

Its a fault I try to restrain but it keeps taking over.... !! So when I feel something needs doing I tend to go for it - but I do fully realise this is a project that others will have been working on and I am not trying to "take over" - just thought it would be a good idea to get everyone's ideas in one place and spark some discussion.

For instance the fact you NEED extra light when most keratoconics are shielding themselves from it points up the danger of generalising in a leaflet... if it states that photophobia is a symptom of KC - then you bet your bottom dollar some "clever" person is going to say - see you can't have KC because you need more light!

AC is also a huge issue - this was the main reason people in Trinidad could not get on with RGP's as almost everywhere indoors has AC. Incidentally - this is why I found Systane was so good. It was the only lubricant that worked over thre!

A point about being off sick... this is obviously something that has to be addressed - BUT - as the old adage goes - beware of what you wish for... I have been an employer myself and understand the frustrations of juggling employees - especially for things like maternity.

Raising general awareness of KC may in fact work against KC'ers as employers will see taking on a KC person as a liability - "Aha... they may suddenly need days or weeks off work... eh?" Particularly small employers. If you a a key person in a small businesss - your employer cannot possibly afford to let you have weeks and weeks off work because you are waiting for a lens refit.

It causes havoc and if they take on other staff to cover your absence and then are very good - then it causes friction when you want to come back.

Larger employers are more flexible and as a nurse, the hosptial can call on agency staff etc if you are suddenly off...

This is why I think this all needs to be discussed and thought out fully - because too MUCH information for employers can be just as bad for your health!! A balance needs to be struck. You also do not want to frighten friends and relatives to death. You may have come to terms with your condition but going overboard on the explanations to those around you can be disturbing!! Any information has not only to get your point of view over but also not to browbeat the reader!

My idea is to try and inject a little humour into the information. This diffuses any "over-seriousness" and makes the information easier to read...

So thinking about it - I would love to hear any amusing stories of situations your KC has got you into.,..

Lynn

[Sajeev]

I would like KC to be worded/classified (for contact lens wearers/sufferers) as your visually impaired part time!...as the only way you can get "normal" enough vision is with your contacts and with out them that your "blind as a bat!" and that your reliant on them for your vision and that they are not for cosmetic reasons!

Also I wanted the fact that poor vision takes so much energy out of you..when your trying to go around your daily life as you need to concentrate on everything you do!

I have heard of many KCers talk of the pain...the pain around the eyes
which many people get which is an additional problem which is not well documented!

I think we should try to define KC as best we can from a patients persepective. This is because not only is our vision blurred...there is a lot of grey area in KC!

The trouble is keeping it concise and informative...plus not negelcting the issues which are "brushed under the carpet" that impacts our daily lifes!

Sajeev

[Susan Mason]

I agree with Sajeev

KC should be described, specifically for anyone who wears contact lens as their only form of sight correction as being visually impaired, even if it is only part time. As many of us know the only way you can get any "useful" vision is with our contacts in and with them out most of us struggle to complete normal day to day activities.
As Sajeev says it is important that people know we are reliant on our contact lenses for our vision and that they are not, just for cosmetic reasons or vanity.

I would be quite rich by now if I had a £1 from everyone who told me just to be sensible and put my glasses on/get a pair. And as I am sure you can understand it does get a little irritating having to explain all the time.

On a funny story note, once in a meeting situation at work and whilst trying to explain the problem and getting no where fast, most of the people involved with me had glasses on. I asked what they could see without them and they all looked at me puzzled, I went on to explain without my lenses in I could see very little, focus wise. Colours and vague object outlines yes but all very blurry out of focus you could say.
I asked did they want to take their glasses off and see how it was working without them all day, surprisingly I had no takers!

Susan

[Sweet]

Lynn - It is ok i was only joking with you as everyone was so busy and it was nice to see that it could all be put together!! I know what you mean about having to do everything at once, i stay up really late to get things done, could even go to the point of being obsessive but i would hate to label myself!!!! LMAO!!!

On stories, too many about losing the dam things!! My poor brother in law, who also wears soft contact lenses but for different reasons has spent hours bless him 'looking' for dropped contact lenses from me and my sister!!!! I remember one day at home banning everyone from the bathroom for almost an hour as i had lost it, and then finding it down the side of the radiator! Have even had to fish for it in the u trap on the sink, lets just not go there!! I'm just so glad that sclerals are so dam big that i guess even i can't lose them!!!!

And years ago my sister and i got them mixed up and wondered why the hell we couldn't see and didn't realise until hours later! Oh the things you do! I think alcohol might have played a part mind but sssshhhh!

Good luck everyone with all the hard work! Goodnight

Claire X

[Janet Manning]

Great to see the enthusiasm for writing a leaflet for employers. I wrote a leaflet for schools, Unis and colleges a couple of years ago, which was then beautifully produced by the KC group. I have always had it in mind to modify this for employers. The main thing that held me back was that I have only ever worked in education and am now self employed working from home, so didn't feel I had a sufficiently wide experience of 'the workplace' to generalise.

The lists of issues put forward are great and it's wonderful that Lynn is going to do something about this. Maybe the 'Schools' leaflet might be helpful as a starting point. I tried to write this from a positive perspective, getting away from the 'sufferers/victim' mode, just stating clearly what the issues are and what helps in the management of KC in an educational setting.

Not sure if the leaflet is available on this site. If not copies can be obtained from Ann Klepacz.

Good luck Lynn. I look forward to the end product.
Janet

[Mike Oliver]

It is great to see so much going on but , as usual, I make this post with my pompous KC Group chairman hat on. Firstly I am only a layman and have no more medical knowledge than anyone else. So it worries me a bit when I think of those newly diagnosed who find our site and see assertions that one thing or another is the answer to all our problems. Personally I believe for some there may be one way of managing KC - but for most it is a case of trying different ways and approaches as both the condition and medical advances change and develop.
I have learnt a lot from the information and sources people have posted and a free flow of information can only be a good thing. However as the old saying goes , a little knowledge can be a dangerous thing so for myself I think a balance needs to be kept.
Something which shows things from the KCers view sounds like a good idea and I would fully support this . But we already have other general information leaflets and booklets dealing with the condition itself which are available either through the main site or the Group address.
A leaflet for employers guidance is already in an advanced stage of preparation and hopefully this will assist some - further announcement as soon as possible.
Finally will everyone please accept my apologies for the delay in finalising our June conference. This is entirely my fault. We do now have a programme of speakers and details will be circulated as soon as possible

[Lynn White]

Janet..

If it the students leaflet then I have just looked at it.... and Anne has emailed me about it also...

This a good start and you are quite right... it needs to be positive. And I will emphasise again to everyone... a leaflet for employers cannot be too negative...

I know you all want to explain to everyone what being KC is like... but it will not actually help you from an employer-employee relationship point of view to over-emphasise the negative sides of the condition...

So what on earth do you say ... I hear you all cry....

Well... you emphasise you are as normal as anyone else... when you are wearing contacts. ie we explain the part about glasses not helping... also mention that getting the right fit takes some time... but don't actually dwell on the fact that if you need a refit you may be weeks out of lenses....after all .. that may not actually happen when you are with a particular employer...

I think dry eyes get a mention... in fact I was going to ask if anyone finds humidifiers helpful?

Mentioning that glare can be a problem and adjusting computer screens maybe helpful...

Now... I am interested... has anyone actually mentioned KC at a job interview?? Or do you mention it once you get the job?? This may well ahve an impact on how the info is presented...

Lynn

[Sajeev]

Ahhh janet was it you who done that leaflet for schools (Thats on the front page)...I must thank you for that as it was very well written. When I read it...it just felt right!

I showed some Kcers from overseas this...some who where parents...they also really liked it...it was spot on!

Something with the same vibe would be just nice!

Catch you later..TEAM!

[jayuk]

Hi Lynn

I have never mentioned it in an interview, or as a disability on a form. However I have mentioned it as part of Occupational Health for a Private Health Scheme.

Its never been an issue. But I personally would NOT mention it within the disability section of a form. Companies have different application forms and some are specific to body parts when asking questions, as some are to conditions such as blood pressure etc.

Saying that, I have never actually told anyone at work that I have KC, as i cant be asked to explain it. Just telling people I wear contact lenses for a eye condition is the most i have said.

Although a funni story was when I once took out my Scleral at work!...You should have seen the reaction !!!! Was funni..so now people think i put Barbie Soup Bowl dishes in my eyes!.....freaks lol