UK Keratoconus Self-Help and Support Association

Firstly I'd like to say a hello to you all.

I've been on and off this board since seeing a notice about the group within Moorfields hospital. Whenever visiting the KC group board and reading posts I’m always happy to see such helpful responses.
Now my situation, I've been wearing gas permeable lenses for around 7 years or so now and well I feel now is the time I would like some advice and help from you guys because I just don't know where to go from here.

My prescription from what I can remember is around -8 on the left eye and -13 on the right. I can’t remember the other figures.

My problem is not with vision, with lenses I have perfect vision and when lenses are on they feel fine, unless dust or grit gets in them! I finished University a few months ago and have successfully gained full time employment. Now that my life has gone from living a student lifestyle to a working and well busier one, the demands I place on my eyesight have increased. Where before I would just pop my lenses out and sleep because I would be free, I don’t have that luxury anymore and am therefore wearing my lenses for a lot longer than I should. Average use is easily over 12 hours a day. I did get a prescription for glasses from Moorfields however vision is pretty much as bad with glasses than without glasses or lenses which renders my expensive glasses useless.

I know I am still young and my eyesight could deteriorate further, although it has been stable for around two years or so now, but I feel now would be a better time than any for me to undergo a procedure whether it be laser or an alternative.

I did talk to my cousin sister who recommended a doctor who I rang but the only problem is they don’t want me to wear lenses for 6 weeks before the appointment which is something I cannot do due to recently starting work and so not being able to get that kind of time off work until next year.

As you can probably tell by now I haven’t really looked into this yet as I don’t know where to start. All I know is the busier I get in my life from now, the more I am going to rely on good vision.

Well sorry for the long first post but at least now if ever I post again, people will know my situation, not saying you have to remember, I can always redirect you to this post (",)

Cheers

Trandeep, Welcome to the forum!

Congratulations on the successful completion of your degree, and on finding work; not a small accomplishment in the present climate.

I your place, many ears ago, I had to decide whether to continue with lenses or to accept other remedies. Lenses were working well for me, they were not too uncomfortable to wear and gave me good vision; the 'part time blindness' when my lenses were out was something with which I learned to live.

I decided to persevere with lenses, thinking that if I waited until I had nothing to lose then any other measures would carry less angst for me.

What treatment were you thinking about? If you see an ophthalmologist at Moorfields, why not discuss all options there before going to see another doctor?

All the best

Andrew

I have just had a consultation regarding crosslinking for my KC. The clinic i had the appointment at just said to me ideally leave you lenses out for 6 weeks if RGP, 2 weeks if soft lenses, but they realise that KC & contact lens wearing go hand in hand so said the minimum to leave the lenses out was 48 hours.

I still have vision in one eye with glasses (driving standard as KC very early stages in that eye) so am able to manage without CL.

What sort of procedures were you looking at, and were you looking at clinics who understand KC? Could you talk to the professionals at Moorfield and ask them to recommend someone to talk to about sugical procedures?
There are a couple of procedures available to people wth KC, mainly Intacs (available on the NHS) and Crosslinking (avaiable Privately, or still at trial/NICE stage in the NHS).
There is plenty on here and on the web in general about both these procedures, and it is worth doing your own research into the procedures prior to talking to anyone about them.

Hi Tarandeep

The main problem is that most surgical procedures have the possibility of needing to wear lenses afterwards as well anyway, so the lens issue will not simply go away. As LizB implies, the main issue is that RGP lenses tend to mould the cornea so they need you to leave lenses out in order to make sure all that is gone otherwise the results will not be as expected. Moulding issues are much less with soft lenses, so it may be worth while asking Moorfields to refit you with those and if you actually get longer wearing times, then surgery maybe can be left until you can arrange more time to devote to it.

Lynn

Trandeep,

Do your new employers know about your KC?

From a health and safety perspective it would be beneficial if they do and if you are using a computer for more than 30% of the working day you need a VDU assessment, a legal rquirement where more than 5 people are employed by the company.

This is regardless of looking at other tretament options becuase it sounds like you are concerned about over wearing lenses. The VDU assessment should take this into account and your organisation occupation health shold be able to support you in organising your working day so your lens wear is more flexible. soemthing we are all entitles to due to KC being a disability in its own rioght and as such we are coverd by the disability discrimination act.

There are several things that help many of us who work;

1) Drink pleant of water
2) use luricating eye drops
3) Sit away from air conditioning units
4) get the lighting right for your needs
5) have a larger monitor and prefferable one where you can customise the screen settings independent of the computer operating system.
6) take regular short breaks when using a pc to prevent eyes drying up and eye strain.

By talking these over with your employer, and explain why you have been advised to go six weeks without lenses they may well help and arrange things so that your new carear is unaffected and allow you to go the six week period without lenses by making reasonable adjustments to help.

Already a great response, thanks a lot guys (",)

Andrew, I did have an appointment booked with the doctor at Moorfields who does laser surgery and from the initial talk on the phone it seems my left eye is within the limits of laser treatment whereas my right eye is outside. I think I will cancel this appointment and first have a talk the next time I have a check up at Moorfields. It’s something which in previous appointments I haven’t mentioned as I’ve always heard my eyes are doing ok apart from some scarring.

Lizb thanks for the heads up on crosslinking. Never had heard of that treatment before and it sounds quite interesting. i wonder if after having crosslinking something like laser surgery would be better to carry out as the cornea is stronger. It seems as though your vision isn’t too bad as you still have driving standard vision whereas in my case i only have driving vision with lenses. Driving is something else which will become part of my life, never needed a car during studying but i will soon be sharing my mum’s car so that’s something else I’ll need my eyes and therefore lenses to rely on. Implants such as rings seem like an option as the process is reversible and if needed can be changed. I would still need to look into whether they provide the same kind of vision enhancement as RGP lenses.

Lynn, I’m not looking for a quick fix, far from it. I just want to be able to live as normal life I can when my lenses are out e.g. if I’m at home and don’t plan to go out, I could pop my lenses out and still be able to watch TV, use computers, read and all those other household tasks without having to squint my eyes or strain them just to distinguish something. As i was put on RGP lenses as soon as I had my first consultation as Moorfields i thought there would be no option for soft lenses due to how bad my eyes were but it seems it would be best to ask them what the possibilities are first. Background research and getting their advice should hopefully allow me to make an informed decision.

Gareth, I did fill out the health form and sent it off during the beginning of employment and had made a note of KC and how its being managed with RGP lenses. I'm working in the IT sector so pretty much my whole day at work and at home is consumed by staring at a VDU of some sort. my work in a way is good and bad. Its shift pattern work so the last two weeks I’ve been doing nights, to counteract this I’ve just been having loads of sleep during the day which means no lenses in which is a good thing. Also as it is shift work it means I don’t work 5 days a week, every week. It changes between working 5 days one week to working 2 days the following week so on average it works out to around 3 1/2 days of work per week.
As I’m still on prohibition period I don’t want to suggest anything to them yet. During the interview funnily enough I had to be at moorfields straight after and told them about my eyesight during the interview so they are aware i have treatment at moorfields, they just don’t know what for. I was thinking of just taking the time off next year when I have my full year’s allocation of holidays and could take a combination of paid and unpaid time off.

Thanks everyone for the help so far though.

One thing to be aware of, although your employers may know you are being treated for an eye condition it is important to make them aware that is is long term. I appreciate you may well be unable to disclose the full information you gave at your interview here.

Post probation, employers may hold you in breach of contract if they feel the full extent of any medical condition you had at the time of employment wasn't fully disclosed. This is because an employer might think they were taking on someone with a short term medical problem and the treatment you were going for straight after was to rectify things. KC as you know is long term and we are anable to forsee what impact it will have on us in the future. For most people this is no problem at all and they carry on working like anyone who wears contact lenses because they prefer them to glasses.

Within your probationary period you should still receive a VDU Assessment also known as a Display Screen Equipment assessment which is a legal requirment. If you need anything to help, your employer must provide it and if they need help then Access to Work may help whereby your employers only pay about 20% of the costs and after you have been employed by them for a certain period of time (I don't know how long) the equipment is fuly owned by your employers so there is a slight incentive for them to keep you on.

Have a look at some of the downloadable information accessed via the home page which includes health and safety at work, your employers legal obligations and yours.

Gareth,

I've had a read of the material provided on the home page. Some very useful information so i thank you for directing me to them. I think I may print them out to ensure my employers are aware of the situation.

Just to ensure you I have made it clear to my employers of my condition. Along with my contract I was given a health form to fill out on which I wrote about KC and how it is being treated. It was posted straight to their health clinic. This form also allows them to access my health records so I haven’t hidden anything from them.

So this VDU assessment, is it something I should be carrying out or do they? I had a quick read about this and it seems its about having an appropriate working environment in essence

The VDU assessment is carried out by my employers, within my workplace - i think it should be the employers but i am not certain that is the case. Previous employers have never carried out a workplace assessment but have jsut said let them know if i need anything in particular - could have easily spent a lot of their money as i also have upper back problem as well as the eye condition with them doing that.

I had my VDU assessment done by two people from the RNIB, working under contract to JobCentre Plus. At the end of this process my employer chipped in half the cost, and JobCentre Plus chipped in the remainder of the cost of a new Mac with embedded access software: a huge LED screen that enabled me to set my computer to display text in large font without spending my whole time scrolling left or right.

Along with this came a video magnifier that allows me to display text from hard copy documents, books etc on my computer screen. I can split the screen so that half is magnified text and the other half is computer text.

Andrew