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Posted: Tue 20 Jun 2006 11:11 pm
by mike scott
hi , just to introduce myself, my name is mike and i have KC in both eyes though it is more severe in my left. i am 40 and was diagnosed when i was 18. i suppose that i'm lucky that i am still wearing rgp's but some days i dont feel lucky. i have just joined this group after mcr royal eye gave me the details. up until now i have never met anyone lse in 22 yrs who has this condition and for all those years have felt like an alien, an outsider to the rest of the world, trying to fit in and be "normal". despite the problems we all suffer, i've kept this condition a secret to myself and throughout the last 22 yrs i can count on one hand the number of other people who know i have KC. this is from a deep anxiety that people wont understand it and will trivialise my problems because it cant be seen, and i dont want to be held back because of peoples ideas about it.
at the moment once again i am experiencing difficulties due to a change in shape in my left eye and am waiting for my new lens, consequently i am only using one lens at the minute which creates its own problems. ghosting, double vision, increased reliance on my "good" eye but causing migaines and a lack of concentration.
my employers dont know of my KC and i am agonising on whether to tell them or not, it is a large international retail chain.
also i work in an environment where the air is conditioned and the lighting is exclusively flourescent, this creates significant glare, especially when i'm tired. i have been considering wearing light sensitive sunglasses at work. does anybody else do this and what if any are the thoughts on these dillemmas. look forward to suggestions.

Posted: Wed 21 Jun 2006 12:39 am
by John Smith
Hi Mike,

My advice would be to tell your employer. In my personal experience, larger employers will generally have the processes in place to exercise their "duty of care" to their employees.

They may send you off to the Occupational Health dept., but that would likely be for them to understand what was wrong with you and what their responsibilities are. And of course, legally, to determine whether your condition would be covered under the DDA.

It is of course your own choice, but when I "came out" to my employers I felt a huge weight had been lifted from my shoulders.

You may find our Factsheet for Employers helpful, too.

Posted: Wed 21 Jun 2006 7:19 am
by GarethB
Hi Mike,

I have always declared my KC to emplyers even when it was not a problem for many years with no ill effects on my career.

It can take time to get used to working with just the one eye. I know some people who use an eye patch just so the brain is forced to use the information from the remaining good eye while doing close work such as reading and computers. The brain is not straining to make sense of the blures in the eye it once could see out of too.

Air condition ing is a problem for many of us and after a VDU assesment from Occupational Health we had my desk moved closer to the window that is better for me as the effect of flouresence lights is not so great and I am further away from the aircon.

The grare from the lights on the computer was resolved by getting a new 19 inch flat screen monitor so I can see it without lenses (my nose may be close but atleast I can work). The brightness and contrast are real low and I have used the monitor menu to set the colours to my preferance which is easier on my eyes. Doing it this way mean pc software does not change things back to a default setting. When I have been reduced to one lens, I have often stopped using that too and be partially sighted and use the monitor with different resolution. I found this the best way to avoid the headaches for me.

As for light sensitive glasses I find for me they do not react when I want them to so consequently I have a range of sun glasses from the optician in the exact grade tints I want.

Back on aircon, many here remove their lenses mid-day just to freshen their eyes and re-wet the lenses. I have found that drinking plenty of water helps, I get through about 2 litres per day and lubricating eye drops first thing in the morning and last thing at night help too. For comfort I try to stick to wearing between 8 - 12 hours ith one day off lens wear at the weekend.

Hope this helps.


Posted: Wed 21 Jun 2006 3:45 pm
by mike scott
well great news today i hope. had my new lens fitted at the hospital (mcr royal eye) and it feels great.
thanks for your thoughts gareth and john, i really appreciated them and in response, i spent time discussing what sort of "sunglasses" would be most useful, and am now the proud owner of a pair of glasses with a light graduated tint, dispensed by the hospital, so i'll see how that goes, but it looks like a good move. the optom agreed with gareth that light sensitve glasses may not work the way i would want them to.
the optom was also very excited to show me a pair of glasses apparently new to the hospital from italy and explained i would be the first to try them for him, so with that he proceeded to undo a smart looking package on the desk.
to explain, they are a wraparound frame with side protection (for wind) withtwo sets of lenses that are interchangeable, the first set being traditional dark "sunglass", the second set being amber, these i tried. wow, the definition of lines and improved contrast was incredible, the amber works by taking out blue light, which immediately reduces that hazyness, and everything jumps into a more pronounced 3D. fantastic. i need to get some,
when i have crossed the hurdle of wearing my new glasses in work.
also thanks for your advice and thoughts on "coming out" at work, this i feel is going to be inevitable and i agree the point it would be a weight off. its not that i feel that i need any specific support from work , but just understanding when having a bad eye day (time).
and thank you every body for making me welcome and feeling part of a community

Posted: Wed 21 Jun 2006 3:50 pm
by GarethB

Those glasses sound excellent, the closest I have is a set of dark safety glasses that wrap round to keep dust out.

Would like to have a proper set where I could remove on lens if I wanted just to remove the glare for days when it is not so bright.

Glad to hear the lens worked out for you.



Posted: Wed 21 Jun 2006 5:44 pm
by Andrew MacLean
All the best. great to hear the outcome.