I have keratoconus

[Imben]

So I'm 16 and a few months ago I was diagnosed with KC. Ithink I've had it for a few years as I've always complained of my eye straining, my mum said it was because I needed glasses. Sparing the details, I was diagnosed in June. I was told I've past the stage for contact lenses and that I needed a corneal transplant. I was told I had to wait a maximum of 12 months for the transplant but because the NHS only receive a cornea once a week they are still addressing clients from 2013, meaning I now have to wait upto 15 months. Having KC is literally hell for me, my eyes constantly strain, everything is blurred all the time, very sensitive to light especially room lights, eyes feel like they're burning and so on. I struggle even to open a tin of beans as my eyes are straining. It's also happening at the worst possible time as I'm in college now. I have to work on rooms with lights that kill me, all my assignments have to be typed up meaning I struggle with that as well because screens hurt my eyes big time. I sometimes can't even look at my laptop as it is so painful let alone reading what's on it. I have no energy either to do ny assignments as my eyes have to work so hard during the day. This should be my time to shine, but KC is holding me back massively, I can't even get a job because of it. My parents are considering going private but it's just so expensive. I don't know what to do anymore aha, no idea how I'm coping.

[Anne Klepacz]

Hi Imben and welcome, though I'm really sorry to read how much you're struggling. But you should be able to get help to make your studies easier. Have you found the leaflet about 'supporting students with KC' that you can download from the homepage of this site www.keratoconus-group.org.uk/sitev3/publications.html
Do print that off and give copies to your tutors at college and tell them about the difficulties you're having. You don't say what part of the country you're in, but there's a charity called Action for Blind People www.actionforblindpeople.org.uk that has offices all round the country. They have education advisors and if you talk to them, they will be able to tell you about the extra help you can get (things like special software for your laptop, maybe even a support worker who could help with things like typing up your assignments). Schools and colleges should all have someone who is responsible for helping anyone whose studies are affected by health issues and that includes sight problems, and an education advisor from Action would be able to talk to them and explain what extra equipment and other adjustments could be made for you.
It sounds as though your KC has progressed very quickly over the last few years, which is unusual but does sometimes happen to teenagers. It's also unusual to be 'past' contact lenses so soon after diagnosis though it can happen if diagnosis is delayed like yours was. Did the hospital try to fit you with any contact lenses? And if so, did they just try one sort of lens or several different types? And if contact lenses really can't help you, then it's disappointing that you have to wait such a long time for a transplant. One way of perhaps getting the operation sooner would be to tell the hospital that you're prepared to take a cancellation slot at short notice (sometimes people have to cancel because they get a bad cold just before the op).
Or is there another hospital not too far away from you that your GP could refer you to for a second opinion?
We have an information booklet about keratoconus, which would help you to explain the condition to other people (most people have never heard of KC!) If you e-mail your postal address to me anne@keratoconus-group.org.uk I'll put a copy in the post to you.
I'm glad you've found this forum - there are lots of people with KC here who will understand the problems you're having and maybe come up with some other ideas for you. Meantime do come back and ask more about anything I've said here.
I hope some of it helps.
Anne

[John Thatcher]

It may help a little for you to know that there are a lot of us out here who DO know what you are going through and can empathise with you Imben. You are certainly having a bad time but one other possible source of help, further to those Anne has given you, might be Blind Children UK. Don't be put off by their name because what they do is help young people with visual impairments up the age of 25 and I know they have some very good support workers. If you google 'blindchildrenuk' you should find a contact point near you. They support people with a wide range of vision conditions including KC but are especially good at helping with education needs so are worth a try. Good luck.
John