has KC ever cost any of you your job

[babyd0ll]

hey guys
im new the forum but have found so much good advice here so far

I was diagnosed with keratoconus in July last year, my eyesight deteriorated quite quickly and it took not working and slowing down in lockdown for me to realise how horrendous it had gotten. I have been given the rigid lenses which for the first month were fantastic and i had a pretty good correction however now theyre a nightmare, my eyes are super dry, the lenses are scratchy and uncomfortable and roll around or fall out and constant protein build up despite using tablets twice a week. my tolerance to them is super low but i perceviered nonetheless but i just cant cope anymore

Ive recently had to have the talk with my manager about my job. i work in a very unsuitable environment for the condition its a dark basement shop with lots of artificial lights, no natural daylight and its incredibly dusty and has dusty aircon. i can barely see in work and my eyes dry out and end up full of dirt. I have been super depressed recently as my KC has been unbareable and unmanagable - i think i have cried everyday for at least two weeks and dread having to go about my day. im super light sensetive and i have to wear sunglasses just about everywhere and even then im still pirate eyeing (lol)

Im currently on UC anyway as i only worked 2 days and they shortened my shifts, i was working for myself as a model before the pandemic but since returning to the photographic industry i'm even finding that a struggle with the long days. i spend a fortune on eye products such as drops, allergy drops, overnight drops but nothing is working
I have applied for Capability to work on UC and im being supported by Shaw Trust for going into another job and managing my condition

sorry this is a bit of a woe is me post - just feels like nobody else really understands unless its Moorfields or the optician.

[Anne Klepacz]

Hello and welcome to the forum,
This is the place that people can post tales of woe and know that readers will understand. I didn't lose my job through KC, but I certainly had sleepless nights worrying that I would when my eyesight was at it's worst. And sadly there have been some people here who have lost their jobs (though it's much less common now) and others who have retrained to do work that's more manageable. Employers should make 'reasonable adjustments' for anyone with a health issue, which might include a different role in the company. But if it's a small employer, that's easier said than done. Your workplace does sound like a nightmare for anyone with KC. It's great that you're being supported by the Shaw Trust, Have you seen the various leaflets about KC and work, and the information about sources of help on our home page?
https://www.keratoconus-group.org.uk/in ... s-to-work/
There's a lot there, including videos on the topic. Some of it might be useful for your support worker to get more insight into what issues KC can cause. And have a look at our latest newsletter (under Publications on the home page) which included a summary of a Zoom meeting we had on the subject earlier this year.
When are you next being seen at Moorfields? Do they know how much trouble you're now having with your lenses? There are other lens options, including wearing a soft lens under the rgp or the various scleral lenses, so maybe it's time to be looking at alternatives to the lenses you have. If they are rolling around or falling out, then the fit is clearly not ideal and maybe can be improved. What drops are you using for dry eyes? Different ones work for different people, but I've found Hylotears better than anything else I've tried.
Are you being monitored for eligibility for corneal crosslinking (CXL)?
I don't know if you're already on our mailing list, but if you aren't, do e-mail me on anne@keratoconus-group.org. uk if you'd like to get our newsletters and notices about meetings (on Zoom these days, though hopefully we'll go back to actual meetings before too much longer.

[gsward]

Hi, I can remember struggling with hard (RGP) lens. Scratchiness and a tendency to fall out is a common sign of keratoconus. It happened to me once in the middle of a presentation I was giving but fortunately, I caught it and carried on. My boss said to me afterwards "did something happen when you were speaking?" It did give me the opportunity to explain the detail of KC!

Perhaps if you fill us in a bit: Where are you actually being seen at the hospital (Moorfields) or high street optician? How long have you had your lenses? When are you due to go back? As Anne has mentioned rigid lenses are not the only option and it often takes a few tries to get things stable. Protein can sometimes build up when there is not enough of the right tear flow. Are you using any other make-up near your eyes that could be causing the sensitivity?

Graham

[grewski]

have you tried wearing glasses to protect your eyes from the dust.. when I'm out and about I always wear wrap around sunglasses and have gamer glasses for indoors

[babyd0ll]

Hello and welcome to the forum,
This is the place that people can post tales of woe and know that readers will understand. I didn't lose my job through KC, but I certainly had sleepless nights worrying that I would when my eyesight was at it's worst. And sadly there have been some people here who have lost their jobs (though it's much less common now) and others who have retrained to do work that's more manageable. Employers should make 'reasonable adjustments' for anyone with a health issue, which might include a different role in the company. But if it's a small employer, that's easier said than done. Your workplace does sound like a nightmare for anyone with KC. It's great that you're being supported by the Shaw Trust, Have you seen the various leaflets about KC and work, and the information about sources of help on our home page?
https://www.keratoconus-group.org.uk/in ... s-to-work/
There's a lot there, including videos on the topic. Some of it might be useful for your support worker to get more insight into what issues KC can cause. And have a look at our latest newsletter (under Publications on the home page) which included a summary of a Zoom meeting we had on the subject earlier this year.
When are you next being seen at Moorfields? Do they know how much trouble you're now having with your lenses? There are other lens options, including wearing a soft lens under the rgp or the various scleral lenses, so maybe it's time to be looking at alternatives to the lenses you have. If they are rolling around or falling out, then the fit is clearly not ideal and maybe can be improved. What drops are you using for dry eyes? Different ones work for different people, but I've found Hylotears better than anything else I've tried.
Are you being monitored for eligibility for corneal crosslinking (CXL)?
I don't know if you're already on our mailing list, but if you aren't, do e-mail me on anne@keratoconus-group.org. uk if you'd like to get our newsletters and notices about meetings (on Zoom these days, though hopefully we'll go back to actual meetings before too much longer.

Sorry for the ever so late reply - i have been really miserable recently !

I had an emergency lens appointment at Moorfield's and they could see that i don't make enough tears to wet the lens surface but couldn't tell me if my prescription changed because the lens surface was so bad. so they changed my lens material which is no better i explained that in my phone appointment and they recommended that I went to eye A&E to be checked and tell them i need prescribed eye drops - this is something that they weren't listening to me about, i've also requested stronger anti allergy drops from my GP. just feels like an ongoing never ending battle if this is as good as it gets i don't know how i'm going to cope working full time again. I'm also a sole trader in tv, film and a model, i found a freelance job but its staring at a screen all day with studio lights on me, i've really struggled with that so far too and its only 8 hrs with 2 hours breaks.
I did leave my job, my last appointment i told them about my place of work and they said it was almost certainly contributing to visual symptoms like the headaches, eyestrain etc.

[babyd0ll]

Hi, I can remember struggling with hard (RGP) lens. Scratchiness and a tendency to fall out is a common sign of keratoconus. It happened to me once in the middle of a presentation I was giving but fortunately, I caught it and carried on. My boss said to me afterwards "did something happen when you were speaking?" It did give me the opportunity to explain the detail of KC!

Perhaps if you fill us in a bit: Where are you actually being seen at the hospital (Moorfields) or high street optician? How long have you had your lenses? When are you due to go back? As Anne has mentioned rigid lenses are not the only option and it often takes a few tries to get things stable. Protein can sometimes build up when there is not enough of the right tear flow. Are you using any other make-up near your eyes that could be causing the sensitivity?

Graham

I'm a patient at Moorfields - i had my lenses since September but they just got really bad, i went back on May 11th as an emergency appointment and they swapped my lens to classic ones which tbh are no better really. As for makeup everything i use is hypoallergenic and for sensitive eyes - i don't use eyeshadows or eyeliners anymore, i explained to my consultant that makeup is something that i really enjoy and i love wearing it, i'm not willing to give that up on top of all the other things i now struggle with and can't do. they did say my eyes don't make enough tears but OTC eyedrops aren't good enough, i use 2 hyco's a month and i'm currently not working as i did leave my job so obviously i can't be spending nearly 50 on eyecare (that includes eyedrops, overnight drops and hayfever drops)

I've given in and started wearing sunglasses everywhere, i'm not particularly sensitive but I've had a few comments from members of the public 'why are you wearing sunglasses' in x y z places where its not sunny, which have annoyed me but it really has all built up

[Green]

Regarding makeup, Lancome waterproof mascara is ophthalmologist/dermatologist tested and their remover much less oily than others, not the cheapest but if its the one thing you pay out for than worth it. It helps to use a pad, then 'rolls' buds over the lashes, wipe off residue with moistened pad then lastly flush out the eye with hypromellose.
Using an LED magnified mirror on a pedastal helps, with cotton bud at hand in case any goes onto inside rim.
Don't 'pump' the mascara up & down, better to 'stir' and change ideally every 2 months