Bit of an odd one here...

[Peter Turton]

Hi all,
Here's the life story very quickly...
suspected KC in November 03 after an RAF medical
two consultants appointments in January and March shown it was only mild and shouldnt progress very much, with visual acuity being 6/5 in Left eye and 6/6 in right (i.e. normal vision) and also only limited evidence for KC and no current need for treatment

Right heres my problem...
My visions fine,but in the last few weeks, mostly at night, when I look at a TV screen, although I can see the image normally and can see everything, I can see a sort of light refraction at the bottom of the screen, a sort of glare (its quite difficult to explain) its not affecting my vision, but obviously its quite annoying.
It only seems to happens with TV's, but not monitors.

Anyone else experience this, or know what the hell is going on?

[Susan Mason]

Please don't take this the wrong way.....however it seems like, at the minute, you are only slightly affected. I realise that it must have been very frustrating/disappointing to have been told about this when trying join the RAF, however in reality, if you stay as you r now, you will be very lucky. The real frustration sets in when u realise u cant see ur childs face 2ft away from you(!) and you have to juggle 8-10 hrs of seeing time to try to get everything done. Life can sometimes be very unfair & as for you point on the tv, try to ignore it. The fun starts when you can see 2 tv's/2 bottom edges of screen about 6" apart!! I too realise that there r lots who will be experiencing more difficulties than me, however it always seems gloomier from your own perspective!!!

[John Smith]

Hi Peter,

That reminds me of when I first started having problems - only with me, the problems were to the left and right of the TV screen, rather than at the bottom, but I suppose the same applies.

I found that one edge of the TV was green, and the other reddish purple. I noticed this much more when watching the TV in black-and-white.

My optician put this down to chromatic abberation in the specs I was wearing - as they were more curved towards the edges, and my eyes weren't used to it.

[Susan Mason]

Peter

Please accept my apologies for my previous message, sounding very blunt and to the point. What I should have suggested was speak to your GP/optician/hospital etc. I realise it is just as frustrating for us all.

Once again, sorry I am having a bit of a rather rough patch again just at present - that however does not give me the excuse to take it out on you.

Susan

[Phil Irish]

i ve put up with this KC for too long now. i am currently 28 years old and was diagnosed with this about 5 years ago.
I am a policeman and when i joined in 1998 my eyesight was perfect.
Then about 2 years later my eyesight seemed to get worse and it all seemed to centre around an incident that i dealt with when i was sprayed with CS incapitant spray.
I have been to the hospital at Leigh lancs and they arent very helpful. I have just made another appointment to try and see the contact lens specialist as i am currently wearing none. i squint all day which gives me headaches but helps me see better.
What concerns me more is my ability to drive.
Albeit my last eye test stated i was ok to drive, ir eally did squint to see what letters i could.
It is far worse in my left eye than the left and really i only see a blurr in the left eye.

What i want to know is what is the best form of treatment and where is the best place to get it.
I received a letter from the NHS hospital this morning stating the waiting time was 17 weeks, ha thats all.

Gutted and frustrated,


Phil irish

[Susan Mason]

Hi Phil

Very frustrating isn't it? Whilst 17 weeks probably seems a very long time it is probably quite quick for the Lancashire area, I am under Bolton and was advised I would have to wait for nearly 12 months for my first appointment several years ago and now waiting for lenses can sometimes take 4/5 weeks. With the current lenses, when I first got them back in May 2003 I had waited 5 months from first fitting appointment to actually receiving the lemses and getting an appointment to be fited with them with a view to wearing them for a month and then being checked again. Obviously I seem to be far more advanced than yourself and you may find that a good high street optician who is interested (Rayners in Bolton seem to have an interest in KC) may be able to assist in the initial stages, which may of course be as far ( as bad) as it ever gets for you.
Do you wear glasses at present?

Just out of interest do you have a colleague from the Bolton area? (Little Lever).

If you want any more info let me know.

Susan

[Roman]

Peter : The problem with TV is probably caused by astigmatism (irregularities) of keratoconic cornea. Every KCer sufer from this glare and sometiems halo effect at night (or starburts when driving at night)

I don´t want to scare you but believe me the career of pilot is not very suitable for someone with KC. I only hope that your KC will stop where it is and never progress unfortunately the fact is that in most cases it does progress and doctors know only very little about this disease so far. Please watch your eyes very closely and regularly

[Roman]

Phil: You shaould find some experienced doctor familiar with KC patients as soon as possible so that he/she can review and watch your case closely and advice you on your treatment. Unfortunately there is no cure presently available for our disease but the correction methods and means are much more sophisticated than in the past.

You could also try some cylindrical glasses to correct your vision before you go directly to contact lenses. Just find some good optometrist to prepare glasses for you and you will see it will help. Glasses are usually good correction in beginning stages of KC which should be your status if you "squinted" your way to pass the eye acuity test for driving. Just to let you know, before my surgery I was NOT able even count fingers at 2 m without any correction and therefore I assume you are really at the beginning.

I wish you best luck