UK Keratoconus Self-Help and Support Association

I was wondering, as a KC sufferer, is it 'normal' to have photophobia? I often have to wear sunglasses, and find it quite embarrasing when it's not too sunny - or when sitting inside a bright place!

Also - are the 'rings' of light - like a halo/star around streetlamps at night related to my KC?

Has anyone found a way of dealing with these 'problems'?

Thanks

Hi Jane

Personally I have these problems too. Even when getting up first thing in the morning at home, I sometimes need to walk around with my baseball cap on until I get used to the light - looks pretty sad in my PJ's.

Sun, wind, dust yes these all have a need to put my sun glasses or dark spec on and I get quite a few daft comments - especially when it's raining.

And yes personally I to got halos/rings of light like starbursts around lights and street lamps at night initially. Now as things have progressed I just get fuzzy balls that I know are lights - amuses my husband though when I can see things that are something totally different.

hope this helps

best wishes

Susan

If I look at lights without my lenses in I see what looks like a bike wheel and it sometimes moves! With my lenses in lights looks fluffy but that is not as bad as the wheels, seeing lots of bike wheels around lights is amazing and worrying! Even the standby lights on my tv, sky box etc have the wheels around them.
Bright lights and sun affects me and I am paranoid about getting bits in my eyes so wear sunglasses a fair bit now. esp when driving with the windows down

Hi Jane,

I'm ok indoors, but outside or when driving I find it much more comfortable to wear sunglasses.

Even in the recent murky weather I've been wearing my large 'shades', even though I may look like a Victoria Beckham wannabee (need to lose a few stone though!) I don't think people really notice and look twice these days, also if you wear contacts they stop grit and other irritants getting in your eyes.

On your other point, I took a night-time picture of outside the house a few months ago, and was amazed how different the street lights and moon look through a camera lens rather than KC eyes.

What a shame for people without KC - their world must look a lot less interesting.

Chris xx

In doors or outdoors I usually need to tone down the light. My lenses have a slight tint not only yo tell right from left but help with the photphobia. I also have three pairs of sunglasses of differing levels of tint depending on how bright it is.

Downside to being out in sun all day which I have been this weekend, I have a white 'mask' where the glasses were so my dear wife now refers to me as Rackoon

Jane

Yes its normal for people with KC to have photophobia and also to have rings, haloes, streaks and other strange effects when looking at lights.

These are due to aberrations and distortions in cornea caused by the Keratoconus - so are "normal" for KC'ers.

The effects when not wearing lenses can be due to short-sightedness, if you have that as well as KC. I am short sighted myself and enjoy lots of "wheel" effects when not wearing glasses or contacts.

Lynn

I get really bad light sensitivity since i started piggy backing. I find the flash on cameras intolerable, so I always have my eyes shut on photos!! It is quite painful too if you suddenly have to contend with a bright light. Summer is a pain with KC, what with light sensitivity and hayfever! Just another thing we have to contend with!

Emma Jones wrote:I get really bad light sensitivity since i started piggy backing. I find the flash on cameras intolerable, so I always have my eyes shut on photos!! It is quite painful too if you suddenly have to contend with a bright light. Summer is a pain with KC, what with light sensitivity and hayfever! Just another thing we have to contend with!

I find flash (photos) totally intolerable, anywhere in the same room/hall/ venue, whatever.
This was long before I started piggybacking.
I'm glad I'm not the only one who haas problems with it.

the result is, I now can't go anywhere if there might be people taking photos there. Which is a bit of a bind.

Rosmeary

That's actually fairly common... which is why Phil was taking long exposure photos at the conference... to ensure that no flash was used.

....just wish he had used a "soft focus" lens too - might have ironed out some of my wrinkles!