just diagnosed and scared

[hugo]

Hi, was informed just before xmas i have KC and my mum found your support group. i have an appoint in february to see a consultant but dont know what to expect. the optician was concerned on diagnosis saying one eye was quite seriously affected, and has prescibed glasses for now which i have to wear for driving ( he had no idea how i had passed car test week before!!) He explained i would require contact lenses and suggested that i will have a choice of getting the lenses through the hospital or returning to the optician
I suppose my biggest worry is what to expect at the hospital, and the costs involved as i dropped out of college last year and therefore am not in education. (i think this was due to the KC as i had struggled for some time with concentration issues on an engineering course). i have not been able to get a job or get any financial help as i am 17. my Mum gets help with NHS costs as we are on family credits. I have heard that the cost of lenses is quite high?? My Mum wants to know if it would be a good idea to start with a savings plan from the optician that would help with the costs??

Also i have noticed that i should be aware of the KC when choosing jobs, i am thinking i would like to work towards joining the prison service but have checked and they state you need (Snellen 6/12 in each eye, aided by spectacles/contact lenses if necessary) - this means nothing to me at all. Can anyone explain, please? Is it right i can no longer dive - i hold an advanced diver cert and and thought to become dive instructor - the KC seems to be changing everything for me.
Do you declare it when they ask if you have a disability on job applications?

so many questions, sorry!
Thanks for any help, Hugo

[Anne Klepacz]

Hi Hugo and welcome to the forum!
Congratulations on passing your driving test. Your sight in one eye must be pretty good - lots of people find that the good eye 'takes over' and compensates for the bad one. The consultant will examine your eyes, and probably confirm that contact lenses will improve your sight better than glasses do. If you get your contact lenses through the hospital, you shouldn't have to pay anything if you have no income or are getting income support. And people with KC who are working are entitled to get their lenses at NHS rates - which is around £52 per lens and that covers any change in prescription for 12 months. So the lenses shouldn't break the bank even if you don't get them completely free.
I'm sorry you abandoned your college course if KC played a part in that. There is much more practical help available for students who have a sight problem these days - have a look at our Supporting Students with KC leaflet on the home page of this website. If you do decide to go back to college, then do give the leaflet to your tutors and talk to the disability unit who would be able to help. And if you pursue the prison service option, then contact lenses should certainly be able to give you 6/12 in each eye. There are very few careers that aren't open to people with KC - the armed forces and being a pilot are probably the only definite noes.
As far as diving is concerned, I know we have a couple of members who do dive, so maybe they'll see this and tell you more about the regulations.
And it probably is a good idea to declare KC on job applications. For many people it isn't really a disability because they manage perfectly well with contact lenses. But if you ever have to have time off (eg because you're having problems with the lenses) then the employer can't turn round and say they didn't know you had a possible problem.
If you'd like our basic information booklet about KC and the DVD of our 2007 conference which covered all the different options there are for KC these days, just e-mail your postal address to anne@keratoconus-group.org.uk and I'll post them to you.
Good luck with your appointment in February. There are lots of us living normal lives despite having KC so don't be scared! And I'm sure you'll find lots of support here.
All the best
Anne

[Andrew MacLean]

Hugo

Ann has pretty much covered your questions. I have nothing to add, really, except to say 'welcome' from me, too.

You will find that information keeps coming at you and you may find it hard to sort out what you need to hear from what people want to say. The main thing is Don't Panic.

Lots of people with keratoconus are able to drive, sometimes with specs and sometimes with lenses. You may very well make the corrected level of vision for the prison service with lenses on.

Every good wish

Andrew

[Charlottes mum]

Hi there. Well done on your driving test! I'm quite new here too (parent member). I have found this forum to be amazing, helpful and reassuring. Best wishes.
Angie

[hugo]

Thanks , all that info has really helped. especially the glimmer of hope with the diving issue, so hoping to get more feedback on that! have driven today for first time since optician banning me, with my new glasses on, and it really does make a difference, so feeling a little more positive, thanks to you all again!!

[GarethB]

Hugo

Congratulations on passing your driving test, I was diagnosed about 3 months after passing my test at the age of 17, well over 20 years ago now. The fact you can get good enough vision for driving with glasses implies that contact lenses may not be esential for you at this stage. The minimum driving standard is 6/12 just l;ike the prison service requirments.

Perfect vision is 6/6 which means you see at a distance of 6 meters what you should do. Therefore 6/12 means at 6 meters you are seeing what a normal person would see 12 meters away. 6/5 is better than normal which means you are seeing at 6 meters what a normal person would see at 5 meters distance.

I don't thin prison service would be affected by the fact you have KC, but what you would need to consider is that if you were wearing contact lenses, what would the affect of being hit in the face be should you need to restrain a prisoner? Glasses can be made from materials that don't break/shatter when hit. The most common contact lens for KC is a rigid gas permeable (RGP) lens which are banned in some sports (especially frowned upon in contact sports) as the elbow is the perfect size for making contact directly with the eye. I have had an RGP lens break whne it was in my eye and it is really painful and can cause damage to the cornea. The good news is that there are a variety of soft lens options for KC which may be worth considering from the start and my soft lenses out perfom the RGP lenses I used to have.

On the lens fitting front, ther are two ways of getting lenses on the NHS;

1) If the hospital has a contact lesn clinic then you would pay the fee Anne mentions.

2) If the hospital has no contact lens clinic, they contract out this service to a local fitter and you would pay the same charge.

Going out side of any of the above you will probably be charged the full cost of the lenses and the time taken to fit you with the lenses. you may also be charged for any replacemnet lenses. If you are with in the NHS system, any replacements needed in any 12 month period are usually covered in the initial payment. Therefore if you want to get lenses from your current optician it would be worth discussing this further with them.

Declaring KC to any perspective employer is important because you may need to take time off work to attend hospital appointments. Employers have a legal duty to allow you time for this, but they need to know incase they need to arrange cover while you are attending an appointment. Some employers place a limit on how much time you can have off sick, but if they know about your KC then they don't take appointment times out of sick leave entitlement or annual leave.

Good luck for Februarys appointment, mine is the last week of February.

[Ali Akay]

Hi Hugo

If your mum receives family credit you should be exempt from ALL charges for lenses and cleaning solutions provided they are supplied within Hospital Eye Service (either actually by a hospital clinic or by a community optometrist working in conjunction with your local hospital). If you choose to have lenses privately you'd still be entitled to an NHS voucher towards them but you would most probably need to pay some charges as well. Its generally better to be within the hospital care so that you can be monitored regularly.

[hugo]

Hello again
Thanks for all the support when first diagnosed in November!
Have been in to see specialist today (with Mum ) . After having ? topography done, the doctor recommended cross linking but told us not on NHS. On asking how much to have done privately she thought around £1000 but looking on this site it might be more. on my next visit in 6 mths can i ask to be referred to a hospital that is undertaking research / audit / clinical governance as part of NICE guidelines as i understand that these are the only places providing service on NHS? Thanks again for the advice
hugo