What job do you do and how does keratoconus affect it?

[Anne Klepacz]

Hi Nicole and welcome,
I hope you've found the leaflet 'Supporting Students with Keratoconus' that you can download from the homepage of this site www.keratoconus-group.org.uk/sitev3/publications.html
and that you're getting all the help you need from your uni. You'll also find leaflets about KC and work there. I'm sure people with KC found life easier in the days before almost every job involved staring at a PC screen for hours on end. But educational establishments and employers should comply with the Equality legislation and make the necessary adjustments to ensure that people with KC aren't disadvantaged.
And there are lots of us here who do understand what living with KC can be like.

[Cherry_blossom]

I work as a paramedic. I've only just been referred for likely KC after having had to get new glasses every 6 months for the past 2 and a bit years for my deteriorating eyesight and having a lot of the symptoms of KC. I was told that when she looked at my eyes my prescription should have been a -5 but I was answering as -1 though it was changing throughout the test. It was actually nice to have someone believe me that it was effecting me and it's actually really scary when your vision deteriorates pretty quickly over a short period.

Anyway the hardest part I find is driving at night. My eyes get tired very quickly anyway and I've found it gets worse at night. Sometimes I can be driving along fine when I'll start going cross-eyed and find it physically impossible to get my eyes to focus. It's like I can feel them going back and forth trying. This will then make me suddenly exhausted to the point that I struggle to keep my eyes open. As soon as I stop driving I'm fine.
I have some ghosting but only at night when lights shine on things and there'll suddenly be two of them. Same for haloing. Another problem I've noticed is that it now takes my eyes longer to focus when I move them quickly, a pain when trying to check your mirrors when driving. I am pretty light sensitive when driving but I was for years before I started getting any other problems and was told that likely just light coloured irises.
I was advised contact lenses can help (I just have regular astigmatism ones at the moment) but I have such dry eyes they are permanently irritating.

It's nice to find a site like this where I can get more info, however, it's also scary because I know if my eyesight deteriorates too much it could easily cost me my career. And I've been told it will likely take me 10 months before I can see a specialist and have any idea what may happen next.

[CrippsCorner]

10 months!? That's quite frankly ridiculous, and not good enough... who told you that?

Can I also ask how old you are? Keratoconus can progress at quite a rate and time is of the essence if you decide to go down the CXL route; you need to get seen as soon as possible to discuss your options. It was about 18 months from my original diagnoses to getting CXL performed and by then it was too late in that I will now rely on contacts for the rest of my life and struggle with driving and television. At that point (I was told much later by my optometrist) it was actually illegal for the NHS to recommend or even mention CXL as it wasn't NICE approved at the time... however now (obviously afterwards; just my luck) it's the other way round in that you could technically sue for negligence.

Yes I've had my problems (see my reply to your other posts) but overall I'd still recommended it. Demand to be seen ASAP!

[Cherry_blossom]

My optometrist told me 10 months. But who knows. It's Wales so our waiting lists are always that much longer.

I'm 24 at the moment and 25 in just over a week. When I went for my eye test I was told it had only been available normally on the NHS for 8 months and they were now being encouraged to refer people asap when they thought they may have KC. What's annoying is that in that 8 months I've had one full eye test and one contact lens appointment with eye test. I brought up the issues I was having but was basically ignored. It was only because I changed optician that I was referred at all. And I only changed optician because I was fed up of being ignored and because Tesco don't have a great range of glasses without the nose pads (I'm allergic to the vinyl the nose pads are made of).

I'm off on holiday for most of June but I'm hoping I may have heard something from the hospital by the time I get home (even just a letter saying they've received the referral). I'm hoping that because I do shifts (making weekday appointments easier) I may be able to jump the queue through taking last minute cancellations.

[Stace234]

Nicole dont worry i squint a lot too even with my glasses on! Clearly they are not doing a lot! Had the same experience at university and had to really battle to get any sort of help (even then it wasn't too useful) but one thing they did do is let me sit in a different room for exams where the natural light and large print papers made everything a lot easier.

Good luck x