Please help me.

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pbsiakht
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Keratoconus: Yes, I have KC

Please help me.

Postby pbsiakht » Sat 17 May 2014 12:00 am

I have had a cross linking done 1 yr ago with it being relatively succesful.
I have very severe kerataconus in my left eye. I cant wear any lens as It simplY cant be tolerated. I have very poor vision from the eye. I want to Have a graft done privately, hopefully a partial thickness graft. The issue i need help from
Is my employer. He thinks im making a big fuss out my KC even though he probably doesn't understand
it. He says I need to concentrate on my job which is more important than all of his. Its mainly because we are so short staffed I feel so low because i get on well with him and do not want to go on bad terms. I desperately want to leave and fight my KC instead of simply letting it progress like it has been slowly but surely. I honestly am beginnig to question my mental Health. Im made to feel bad. Like im purposefully turning my back. I wantto sort my KC out , norhing else. How can i approach it now.

Grant
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Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: Leicestershire

Re: Please help me.

Postby Grant » Sat 17 May 2014 9:20 am

http://visionsimulations.com/simulators ... -simulator

I've found this link - which was posted by someone here - very useful in explaining to others the kind of vision that KC suffers have to deal with. Maybe arrange a meeting with your boss, take him through some examples and explain that as a progressive condition it's only likely to get worse. I'd also explain that you will be having the graft and the extended recovery time means that your boss has to start succession planning sooner rather than later. Offer to help train your replacement?

Good luck.

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Anne Klepacz
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Keratoconus: Yes, I have KC
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Re: Please help me.

Postby Anne Klepacz » Sat 17 May 2014 10:17 am

Also. do download the leaflets about KC and work from the home page of this site
www.keratoconus-group.org.uk/sitev3/publications.html
And if you put 'keratoconus conference' into the search on YouTube, you'll find a useful talk we had at our 2011 conference about KC and work by employment advisers from the charity Action for Blind People (or I can e-mail you a transcript of the talk if you prefer). They have branches around the country which you can find at www.actionforblindpeople.org.uk - one of the things their employment advisers can do is talk to employers. They also carry out workplace assessments and recommend any adjustments that can be made to make life for the employee with sight difficulties easier.
Have scleral lenses been tried for you? Sometimes people who can't tolerate any other lens can tolerate a scleral lens which doesn't actually touch the cornea.
Hopefully, your employer will understand how much KC can affect some people. But at the end of the day, your eyes and your health are more important than your employer's needs.
All the best
Anne

kieran19685
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Vision: Contact lenses

Re: Please help me.

Postby kieran19685 » Sat 17 May 2014 11:41 am

I think any normal person or company take disabilities and issues such as KC seriously. I work for Next at Head Office and work in front of a PC all day. Next made any adjustments I needed. They have provided me a larger screen and re-positioned two departments to help me sit near a window and away from the air con etc.

I did provide health and safety with a copy of the KC at work leaflet which provides important information to employers which helped other gain an understanding.

KC does affect most of us in some way or form. Most days im fine but some days especially when having a bad eye day I can often feel down and think why me. But in reality half the world have issues with their eyes - perhaps not as severe as KC but require contacts or glasses.

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Lia Williams
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Re: Please help me.

Postby Lia Williams » Sat 17 May 2014 5:59 pm

Hi Irfan,

I've just read your old posts and read that a year ago you could tolerate an RGP in your left eye.

I'm sorry to read that this is no longer the case. What other lenses have you tried? The simplest change would be to try piggybacking - wearing a soft lens under the RGP. Alternatively there are specialist soft lenses, such as the kerasoft lens, for KC. Or scleral lenses which vault over the cornea. Any of these options might work for you. It would certainly be worth asking to try them - and if your current optician doesn't offer them ask if you could be referred to someone who does.

Lia

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GarethB
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Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
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Re: Please help me.

Postby GarethB » Tue 20 May 2014 6:22 am

First thing you need to do is print of the leaflets as previosly mentioned and make sure your employer and HR department are aware of their legal obligations under the Equalities Act. Basically they have a legal duty of care to make reasonable adjustments to your work environment and equally you have a legal duty of care to work with them and try the adjustments both parties agree are required.

I too am intolerant of RGP lenses and it isn't always a case of going straight to piggy backing as it depends on why you are intolerant. I became sensitise to the RGP material so my eyes were having an alergic reaction so piggybacking would stop this happening on the sclera but the eye lid would still be in contact and show the results of an alergic reaction.

For me it was soft lenses as the only option and I started with Kerasoft III which worked really well, the only reason I now where KErasoft IC is because I took part in the clinical trial when the lens was developed and my hospital continued to supply the lenses.
Gareth

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FfiB_91
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Keratoconus: Yes, I have KC
Vision: I have Intacs implanted
Location: North Wales

Re: Please help me.

Postby FfiB_91 » Thu 22 May 2014 10:58 pm

Yes, I relate completely with you.

I work as a Manager in Local Government in a very demanding job. I have a very bad eye and basically rely on my good eye. I suffer with tiredness and am slower than others my driving is limited too. I have tried all the CLs possible and now have had intacts and refractive surgery a month ago. The intacts worked then my vision deteriorated. So with CLs doing the job for a while then waiting fod surgery and that doing the job again for a while I am up and down.

KC and work is the MAIN challenge for me with the disease.

I have worked full time until recently and battled through. My main advice is to be open and positive, provide the fact sheet to back you up. Also as it is a disability that is not seen it may be worth considering providing your boss with an image of what we see as KCrs see. ( Google this in images.). I dont think anyone really understands unless they have a visual impairment!!! That is not going to change, I accepted that a while ago and feel better because of it. All you can do is raise the awareness of you boss.

Access to work have helpd me with equipment, support worker, taxis etc. It is a slow process so my advice is to get on the phone as soon as poss. I have been lucky with adjustemts such as home working and flexy hours, I start about 730 now as that is when I am at my best. Saying that, getting the adjustments has meant some persistance on my part. My GP has been a great help, perhaps you can ask you GP to write your boss a letter again as back up.

Really it all depends on what job you do too. Whatever your job I know it is very, very, very, frustrating to have KC as an obstacle at work. Try to accept that this is part of who you are and you can only do your best.

Dont give up. It will get easier.

FfiB
Survivor not Victim. Dwi'n siarad Cymraeg.

pbsiakht
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Joined: Thu 16 May 2013 12:02 am
Keratoconus: Yes, I have KC

Re: Please help me.

Postby pbsiakht » Sat 31 May 2014 2:54 pm

Thank you all for your replies. People like you give me the courage and strength to keep on going.
Have never tried anything else apart from rgp because the hospital keep saying i will get no where near the vision.
But how can they know when we have not tried kerasoft or scleral. Are kerasoft available on NHS?

Grant
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Posts: 130
Joined: Tue 04 Oct 2005 4:05 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: Leicestershire

Re: Please help me.

Postby Grant » Tue 03 Jun 2014 8:19 am

pbsiakht wrote:Are kerasoft available on NHS?


I got mine on the NHS.


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