UK Keratoconus Self-Help and Support Association

I live in the north east of england Durham and I am 43 i have keratoconus in both eyes for about 20 years now. In that time i have only ever meet one other sufferer great to know there are many more of us out there.
I am a patient and tolerant rigid contact lens wearer who would love to put on a pair of specs when your eyes itch and stingand long for a good old rub.
I would like to know if other sufferers have great sensitivity to light? I always have the sun visor down in my car (mid winter or summer time alike), i need the blinds down in the house and night time driving with headlights are all a source of annoyance.
I am totally new to these message boards so I am sure to make many mistakes!

Hi Anne,

I live in Darlington and work in Durham City. I go to Sunderland eye infirmary to see Mr Morgan and have had KC for about 2 years now...

I know what you mean about the light..the other I noticed if someone stands in front of window with the light coming in behind them, I cannot see any detail to their face, clothes etc.

The surrounding light is so strong that all I can see is a silloulette of their outline??

Also i noticed that the 'negative' image of anything I look at that is bright stays in my vison my ages afterwards..like if you look at a bright light and close your eyes you can normally see the image for a while in a blue/green negative..but I see these for minutes afterwards each time I close my eyes.

All very strange, anyway being normal would be boring..but appealing!

Dave.

hi Anne

Ive been suffering for 20 years. I live in Sunderland and go to see Mr wood. There are around 150 sufferers going to sunderland eye infirmary so you are not alone. Like yourself I have never met a fellow sufferer and I have just come accross this site for the first time.

I too have had KC for nearly 20 years and I do find light a problem. I went to my optician to get glasses made with a tint (no focusing changes) to wear as well as my slightly tinted RGP's.

This means I use the sun visor less in the car during the day, but bright sun light from the side is a problem, but my new safety glasses overcome this as they have tinted side protection. The tinted RGP's make driving at night a lot more comfortable. I find a bluish grey tint on glasses halp and my RGP's are tinted blue. Slightly darker blue on my worst eye.

Natural light is not so much of a problem unless it is bright sun. Artificial light, especially fluorecent light and computers are a strain. My pc monitor has an antiglare screen and still has brightness and contrast turned to below 50% and I still wear tinted glasses.

Now the only time I get the urge to rub my eyes is as soon as the lenses are out.

Hope this helps, when I get home will try an upload an image of the tinted glasses and safety glasses I have.

Regards

Gareth

Here is the stuff that helps me;

My tinted Rose K RGP's

The right is slightly darker as it is more sensative.

Tinted glasses I wear inside with the contacts;


My safety glasses which are good in the sun and the laboratory which has white benches, white walls and lots of white light, I find these ideal. Do not need the car sunvisor with these;


I might set off a new trend;


The safety glasses were about £7 and are 100% UV protective, mist and scratch resistant too.

Hope this makes the earlier post clearer & sorry about the image size, I took the pictures and cut them down when I got back from work and taken my lenses out.

Gareth

Hi Anne welcome to the group. I have also very light sensitive, I also have uveitis with KC and I wear very dark sunglasses. I cannot stand light at all The glasses are a help they take the glare away.