I am not alone!! UPDATE

[Veronica Witty]

Thank you, All for your support. It is very uplifting .
I am now waiting on a flexi lens, this has a rigid centre, and softer outside, so I have been told.
The employer fact sheet has been great, I landed it on my boss and HR Manager desk, and they have been most supportive !!! at last.

I will be in touch when I can, not much time with a 3 yr old and husband to look after
I hope everyone is going on OK.

[Andrew MacLean]

Veronica

All the best with your lens.

I have always found that if you give people the oppotunity to do the right thing, they usually do! I'm glad you found the "employers" imnfo sheet a sufficient nudge for your employer to move in the right direction.

Andrew

[GarethB]

I think many of us have found the fact sheets have helped us learn more in ten minutes about the condition we have than anything we have found in all the years we have sufferd.

These leaflets are also good for giving to friends and familly to help them understand too.

[mike scott]

hi there
like you i only found out about this group a short while ago.
anyway i,ve had KC for 22 years now, diagnosed at 18, and i have been offered a graft on my left eye 3 times now and refused so far. the sight in that eye is far from brilliant but i cope well enough because my right eye is a bit better and carries the left so to speak.
the reason i've refused grafting is because i am aware that it is not a cure but another managed solution and although i accept that one day it will be inevitable i'm going to try and hang on as long as possible.
the thing that i was definately not aware of was that KC can reoccur post graft and i find this news pretty scary. i completely sympathise with you and also gareth. its hard enough coping with KC day to day and then having a graft and coping with a new set of problems only to realise KC has returned must be more than traumatic to say the least, and another reason i will persevere without a graft for as long as i can.
re the migraines, i get them a lot, i think this is probably due to eye strain and pushing my daily lens wear tolerance to its limits and sometimes beyond, mind you i usually pay for that the next day. KC always gets me back, but never down for long. o wont let it lol.

good luck. mike

[Andrew MacLean]

Mike

Like you I waited a long time before accepting a graft. Actually I was legally blind in both eyes before I accepted a graft into my right eye. I am now waiting for a graft into my left.

Like you, for most of the time, I coped pretty well. It was only when I became unable to wear lenses in either eye that I had the experience of unrelieved blindness. Up to that time, when I had moved about the house with no lenses on, I had a kind of private blindness and public sightedness (all I had to do was put on my lenses and I could see pretty well).

My children used to exploit my private blindness. If they were somewhere they should not have been, all they had to do was stand perfectly still and I was unable to see them!

Anyhow, I have no regrets about having waited, but in retrospect I maybe ought to have had the graft 18 months before I did, but then I had no way of knowing that in 18 months I'd have been blind for nine months!

All the best

Andrew

[GarethB]

Mike,

KC reoccuring post graft is extremely rare, you are more likly to suffer rejection problems which considering the number of corneal grafts carrried out is far from common too.

The consultant I see specialises in KC and has been in practice longer than the 20 years I have had KC and he can still count the number of instances of KC returning on one hand!

The chances of this happening are far less than 1%, in fact there are so few of us out there that no figures have been colated like rejection statistics!

[mike scott]

hi andrew
private blindness, public sightedness is an excellent way of putting it, thats exactly what it is.
after22 yrs of keeping this secret i have finally "come out " at work.
i've done this by way of now electing to wear tinted glasses to "protect" me from those dreaded flourescents. i,ve had a few comments and a few sniggers, from uneducated colleagues, but had the most remarkable acceptance from the most important place. the company. the fact sheet for employers also played a vital role for me in doing this, it was like a secret weapon in hand lol.
thanks for the communique, its important that we all make each other feel that we,re not alone in this.
mike

[mike scott]

gareth
thanks for that information, that has taken most of that concern away
if its any help to anyone else out there, i'm not religious in any way, but i dont believe god allows anyone to suffer more than they can bear, though sometimes its a lot.
just think, those of us who cope with this problem and compete nearly equally in the world of sightedness, how brilliant we would be if we didnt have this problem!
maybe we were given this to give "normal people a chance.
just a different way of looking at it in a fight against being cynical lol
mike


onwards and upwards

[GarethB]

Mike

Those are very wise words. Andrew will have you writting his sermons next

Since giving up motor racing (will return if a soft lens becomes available for my particular KC) I have taken up concours delegance and polish the race car.

A definite result of KC is my improved sense of touch to the extent I can feel the dirt on my car! As a result, I come away with 1st prize for most competitions I enter. So far I have one every one

Look hard enough and we can find a benefir in most things.

KC has also opend up my career opertunities as it has forced me into new areas of work I would not normally bother with, but over the past 2 years I have found very enjoyable and my career has gone from good to bloomin marvelous

[mike scott]

gareth

you are so right, i find that my sense of touch is vastly improved and i find that i can find my way around my house better in the dark than with lights on. my memory seems to be good too as in i always seem to remember where i've put things, like keys lol.
yes it is good that we can find positives to our situation rather than dwell on the negatives.

i'm curious though, what is delegance?

mike

onwards and upwards