how KC affects your life?

[eman samir]

as you all know KC affects us differently so some of us are greatly affected while other are less likely to be affected.so to what extent KC is affecting your life,your work or your family???does it affect positively or negatively?

[Andrew MacLean]

eman

I try not to let KC impact too negatively on my life.

Even when I lost my sight, I did not need to stop working (apart from time off work following my first graft, I have not needed to take any time at all away from work through KC).

Thanks to grafts in both eyes, I now have my sight back, but there are things for which I still need specialist equipment. With this in place, I am able to get on as well as I would had I never developed Keratoconus.

Andrew

[Sweet]

Hey there!

It has only affected me badly when i was off work for months. Being a nurse i really need to be able to see well to read the drug charts and indeed see the patients i am caring for!! LOL!!

I try to have one day off a week without lenses and then find that i am limited to what i can do. This is ok though as i know that it will hopefully stop me from overwearing my lenses and being in the same place i was before!

I have my bedroom very well organised so that i can find things whether it is a good sight day or a bad one!! That way i can still get up and do things!!!

Sweet X x X

[Alison Fisher]

This has turned out to be a harder question to answer than I thought it would. My initial reaction was that post graft my KC didn't have that much of an impact, but then I thought about it and realised over the years just how much it has dominated virtually everything.

Because of KC I never learned how to drive - which having never been able to I don't miss, but it meant that we decided to live in the city rather than the county so I wouldn't be dependant on my hubbie driving me everywhere. I've made many close friends with people I would never have met had we not lived here, and it just snowballs from there so where do you draw the line?

On a how does it affect me from day to day level, well, there's a definite pre graft and post graft division. Pre graft every day was a painful battle with my contact lenses and getting very depressed and low about everything. Post graft life is great. KC has been demoted from dominating every last little thing to something hovering vaguely somewhere in the background.

[samba_elite]

it affects EVERY part of my life in a negative way,that's not me trying to sound doom and gloom,that's me being honest,there's not one single area of your life tat KC will not affect and there can be no positives.

Sorry to be blunt and all that but it's a fact,from the moment you wake up in the morning to the moment you sleep you have to make allowences for yourself,you can adapt and make it easier to deal with but the truth is from the smallest tasks like climbing the stairs to the biggest like operating machinery,it has a detremental effect,but at different levels depending on your KC's stage of advancement.

[GarethB]

Hi Eman,

I must admit by experience is the opposite of Samba's.

Yes initially KC impacted negatively on my life in all areas, but aftre the graft then KC had no impact.

In 2004 I did let KC impact on my life, but after finding this group KC only impacted on my motorsport which was an indulgance not a necessity of life.

Having found ways to overcome the many obstacles KC brings I would say KC has no impact on 99% of my life while my vision is corrected. Without corrected vision, the only thing I can not do is drive so I would say even with uncorrected vision 98% of my life is completely unaffected.

At work KC gave me the chance to try new avenues of work I would normally shy away from, but I had no choice. The result was I found I enjoyed the challenges given to me and I excell at them.

My opinion is that KC only becomes debiliating if you allow it to be.

I know everyones experience is unique so this post is purely based on my 20 years of having lived with KC in one form or another.

As faras I am concenred although I still have KC, at the moment I am winning because I have turned my lif raround with the help of those here and got promoted at work yesterday in an industry where traditionaly poor vision or any other diability is held against you.

[Simon Hare]

It has also seriously affected my life, i was a taxi driver, earning good money, spending as much time on the golf course as my GP, i crashed into a lampost on a straight road, with no traffic, i was made to do a breath test, passed, made to do a blood/urine test for drink/drugs, passed, made to do a medical, failed on eyesight, lost my license, and my livelyhood. in the months following depression took over, i beat that by reading novels, mainly terry pratchett, but i now find that i need a magnifiying glass to read 'normal' print. Three times my eyes have rejected contacts, and i am reluctant to try a fourth time, so yeah... KC has TOTALLY changed my life, grrrr

[Christine Wright]

Don't give up! As far as contact lenses go, quite a few alternatives have come along in the last few years that you might find more comfortable. As Gareth has already said, there are Kerasoft lenses, if your KC is not too advanced. A lot of people also find Flex edge lenses more comfortable, without sacrificing vision, as they have a rigid centre and a soft surround. Or you could go for large lenses which are more comfortable because they sit on the sclera (white of the eye)which is much less sensitive. You can get SLIM lenses which are 14mm diameter, Minisclerals which are 18mm, or full sclerals which are 23mm in diameter. The main thing is to find an Optometrist with enough experience of these different lenses - they are usually in Hospital Eye Depts.
The people on these message boards can offer a lot of support and sympathy, so it's good you've made contact (no pun intended!)

[John W]

For me, it is getting time away from the kerasofts that is when KC most impacts my life. I have to make future plans, and planning for times when you cannot drive means time goes fast. Im already planning with my girlfriend movements next weekend as we share the car, Ill ask for a lift, but thats time out her day.

I have to say that im lucky that my KC is not too bad, I can legally drive with kerasoft and can get down to the 4th line with glasses (I think that is 1 above the driving standard). But when there is neither option, I hate having to squint. It also gives me headaches and there is also nothing worse than when your eye refuses to accept a lens, its like a burning sensitive to light sensation which means you wear one lens in one eye all day and end up feeling sick.

But all in all, I talk through the negatives with my doctor and when they outweigh the cons of treatment....its time to take the next step

[denner]

It has ruined my life,changed me into a miserable,angry mess,I have been off for six moths with my first graft and can see no light at the end of this tunnel. without my wife and daughter I would not be here.