what is your reaction when you feel a progression in your KC

[eman samir]

i think all of us know that KC is a progressive disease.i wanna know what is your first impression when you feel a progression in your KC???? and when you notice your limited vision is declined??? i think it is the worst feeling that a person might have.......

[GarethB]

First time round Iwas in my teens and it just did not bother me, the options were explained and they way I was brought up meant I accepted that there was not much I coul do except make the best of it.

Second time around it was a shock because I have a job and familly and it really hit hard. When thing were not going well December 2005 I was not stressed and accepted hospital were doing all they could. Took comfort that in UK KC is coverd by disability discrimination act and my employers were supportive so I would still be able to work regardless of how far KC progressed.

The way react is as much determined by our upbringing, beleifs and attitude to life as well as the support of friends, familly and those we work with.

The options available to us are ever increasing so I am convinvced no matter how my KC progresses in the future there will be something to help.

[Andrew MacLean]

eman

I do not pretend to understand the experience of other people with KC, but when my condition has progressed, or I have found my sight more restricted than before, I have always tried to make all necessary adjustments that will allow me to live my life in a way that is as unchanged by adversity as I can make it.

This has not always been easy, but I have managed not to let myself be defined by a disability.

Andrew