what do KC patients see?

[piper]

When it comes to WHAT DO KC PATIENTS SEE? I get out an empty, clear glass, beer bottle and tell people to just hold it up like a telescope, look down the neck, through the bottom and tell me what they see. So far, that is the best approximation I've found. Otherwise, they just can't picture it.

Can't find an empty beer bottle? Call, and I'll empty one for you, straightaway.

Cheers, Piper

[Rich Moore]

Whilst on the subject of telling friends and family what KC is.... Do you sometimes find the whole process more frustrating than beneficial or is it just me? I generally prefer to keep my occasional discussions about KC to my close family. My friends know I have some 'thing with my eyes' but I never go into detail. With the exception of this forum I rarely discuss KC these days.

When I do mention the KC, I seem to get two general reactions. One of 'yeh we all have bad eyes, what's your point?' and at the other extreme, 'Oh my god, I feel so sorry for you!'. The first makes me think that maybe I'm over analysing the issue and the latter makes me feel like I really do have a disability, which in turn gets me down.

Its not that my friends and colleagues are inconsiderate, I think its just that KC has such a low public profile people can not relate. The other aspect that people seem hard to grasp is the inevitable feeling that the KC is slowly progressing, so its hard to predict how your vision will fair in the future.

Can anyone else relate to the above?

[John Smith]

Lesley,

The way to locate the moon through a telescope is to keep BOTH eyes open. Find the moon, and get it so that the easy-to-find image from the "normal" eye is in the centre of the circle seen by the "telescoped" eye.

Then, in theory at least, the moon should be visible through the telescope when you close the "normal" eye.

Hope this helps.

[Alison Fisher]

Can anyone else relate to the above?

I can Rich.

I think the hardest bit for people to understand is why I can see some things just fine and yet other things I really struggle with. I think they expect sight problems to be 'across the board' and consistent, but of course with KC they aren't. I've had moments when I'm sure people think I'm putting it on.

[Anne B]

Yeah i get that feeling too. Once when i was out in the car with my husband i read a sign thet was quiet a distance away and my HUSBAND said "see your eyes aren't that bad"
I have never forgiven him!!

My Dad trys to understand the most but always does a really bad job of it
I went to church with him a couple of weeks ago and a old boy who has eye and drink problems suddenly started shouting at people, when i asked my Dad what the problem was he said that the old boys was a bit like me and found life frustrating.
I was speachless came home and had a glass of wine

Anne

[Lesley Foster]

John,

My problem is that my left eye is the worse affected with KC my vision isn't great even with a lens. My right eye has always been the better but I had a haemorrage across the retina so although the vision has vastly improved I still have some distortion, consequently when I look through a telescope with my left eye I can't see much with the right one because of the distortion and if I use the right eye to see and keep the left open as you suggest I'm still looking at two or three moons! I just keep moving the telescope till I find the moon.

Strangely with both lenses in my vision is fine for driving - just but there is no way I can drive if I have to leave either of them out.

Lesley.

[GarethB]

Rich,

I fully understand what you mean how much do you tell people outside the familly.

My work collegues were given a brief overview of KC and why I might have problems. I work with good team and I knew if they wanted to knw more they would and many did.

I do the same with friends, give the basics and if they really want to know more they will ask and I am quite happy to talk about.