UK Keratoconus Self-Help and Support Association

i am an architect....
my challenges are dust and wind on sites... and airconditioning in the office and staring at a computer.... and trying to see drawings across boardroom tables...
my solutions (although not perfect ) are....wrap around glasses and sunglasses..... rewetting drops and flaxseed oil.... and for the last one i just get up from my seat and go around the other side of the table making a joke about being blind...
i also battle with seeing defects on my buildings from a distance... so i normally take a colleague to help me and try to use it as an opportunity to train them

it has not been easy.. and i agree that it has been easier since my transplant (in one eye) as my employers now believe me and accept that if i need to go to my doctor or wear an eyepatch in the office that i am not faking it.... i think that they thought i was a bit of a hypochondriac before i had my eye cut open....

my suggestions is basically just not to give up.... you will find a way... it may be different to the conventional way... but dont give up

I am a naval officer. Used to be a mine clearance diver but after I had a graft to the left eye, the navy said I could not dive anymore. Ironically, my opthamologist gave me a DALK especially so I could continue diving but my uncorrected va is not good enough (it says so in the book). I never dived anywhere I could see beyond the end of nose but hey! The navy has to be extra careful as they would be in big trouble if they took risks with peoples' health so I do understand the decision. But they have been really good, I got time off after the op and they paid for SuperNova software on my PC. They also did not kick me out, I am still using 20 years of diving experience and coordinating diving operations. I also got sponsorship to do a doctorate in command and leadership, so I am very lucky. I am now at the point where the right eye is progressing fast, so I am looking at another graft. As long as I can see well enough to operate a PC and get out to the dive sites, I will be fine.

hi folks I have tried every sort of eye drops but they fail to touch my eyes and now on graft list official today

I am a waking night support worker in a young peoples home for challenging behaviour .I have good vision in my right eye but am having a graft in my left eye in december ,that one is completley shot with a large scar . Unfortunaley I have had a few comments (some not very nice ) from the YPs in the past about the look of the eye .Adults never mention it ,but kids dont hold back!

I am a waking night support worker in a young peoples home for challenging behaviour .I have good vision in my right eye but am having a graft in my left eye in december ,that one is completley shot with a large scar . Unfortunaley I have had a few comments (some not very nice ) from the YPs in the past about the look of the eye .Adults never mention it ,but kids dont hold back!

hey! I had a cornea transplants 2010. I couldn't afford the expensive contacts I needed, so i have to do without. I've had a Flex Associate job at Banana Republic.

Mostly folding clothes and such. It was good to the point of: customers pointing out wants from afar, dim lighting (made me sleepy) and most of the time half way through, I'd get nose bleeds. I'm 6'2'' and when I inform colleagues of what i have. They all give the same questions: glasses, contacts. Its hard to keep eye contact. Been told by my "best friend" that i had a lazy eye, and it didn't sit well with me.. I've been made fun of my eyesight ever since I was a kid. luckily, no ones that rude out in the real world. But keeping eye contact is hard. which is one of the main things you need in sales...

all in all, go for what your heart desires. T

I'm a graphic designer, I got diagnosed with KC a couple of years ago and had cross linking. I've had to leave two jobs as a designer due to the pain, glare and all the joys that come with it.

I am now out of work and feel utterly useless and stuck on what to do next in my life.

Creativity is a huge part of my identity and it kills me that the thing I love, studied for, and invested time and money is of no more use.

I feel really defeated and sorry to bum you all out but I came on here just to see what options or what other people are doing with their careers and in life in general.

Any help is appreciated as I'm only in my 30s and I don't know what to do. I feel like it stops me in progression or getting to where I know I could be.

I'm a software engineer and I've managed to get by for the past 20 years since I was first diagnosed. Hasn't always been easy, it's taken me a little longer to get to a position I'm happy with than I'd prefer and there's been some compromises that I've had to make throughout the years but I'm still in full time employment.

I work in radiotherapy as an equipment technician - Don't really find keratoconus effects anything specifically apart from maybe looking at lasers! It's a bit hard to see what the fine line is when you're seeing 5 of the same line it's a shame I don't have the opportunity to move on to being a field engineer though, which would bring a £10k pay rise! However it would involve driving around the country, often in the dark which I just cannot do.

Hi Sk_89k,

Like many people my job involves spending far too long looking at a computer screen.

I note that your profile states that you correct your vision with spectacles. You may find that you would get better vision with contact lenses.

I get a theoretical 6/9 vision in my better eye with glasses; except that in practice it doesn't seem like that. I wear my glasses first thing in the morning and last thing at night and they enable me to do many things, but not work. My glasses have a high -ve power so not only do I get some residual ghosting from the KC I also get the effect of minification and some chromatic aberrations.

So although when I read text on the screen or in a book the brain can work out what the distorted words are meant to be it's not so good with figures and mathematical signs. + and ÷ can look the same and in some fonts so do 6, 8 and 9.

Do look into getting contact lenses, you won't know whether or not they will improve your vision in less you try them.

Lia