New Here

[kitty]

Hi, I'm new here. I'm in my mid 30s, was diagnosed with KC a few years ago, acoording to my optician this means that the condition should progress more slowly as I was diagnosed later. My eyesight is currently about -13 in left eye and -12 in right eye but I cope pretty well with glasses. I was told that at my level of eyesight they only partially correct vision because the brain wouldnt be able to cope with the changes if they tried to fully correct it so I think the prescription is about -6.5 in each eye. I was advised to wear contacts but I had them as a teenager for general short sightedness and ended up with loads of eye irritations etc. I saw an eye specialist at the hospital once who confirmed the opticians diagnosis, was pretty rude and offhand with no follow up.....is this normal.

What brings me to the board today is the fact that I have become increasingly sensitive to glare recently to the point where I will have to give up night driving as it simply is not safe, on country roads especially I see a wall of light coming towards me and onto my side of the road from oncoming cars. I'm not bad in town, the streetlights seem to help but if it rains then every drop of rain seems to magnify the light and the halos round it make it impossible to see properly.

I'm wondering if any of you have any advice or know of any type of lenses or techniques for dealing with glare like this. I currently have anti glare coating fitted to my glasses which did help in the begining but not any more.

I'm wondering if it is worth going to my GP and asking to go back to the eye clinic, don't know if they will be any more use than the optician though. I would like more info in general about the condition too.

[Andrew MacLean]

Kitty

welcome to the forum. I'd say that it not at all normal to encounter a rude or offhand specialist. Neither is it normal to be left with no follow-up appointment at the hospital clinic.

Do not dismiss out of hand the possibility of finding a contact lens that you can wear successfully. There have been many advances in materials and lens types in the last ten years.

As to light sensitivity; I am afraid that is something to which we are all prone. I have as anti glare coating on my specs, and I think it is possibly to have your windscreen coated, although. You should take advice from a motoring organization on this, to be sure you stay on the correct side of the law.

The other thing that can reduce glare is wearing properly fitted contact lenses.

All the best.

Andrew

[Lizb]

Go back to your GP and ask for a referral to your nearest specialist eye hospital/clinic and dont just go to your local hospital. My KC has been monitored on a minimum of an annual basis for the past 10-12 years, more frequently if required. That has included me moving house/area and changing my hospital. however i am not under a specialist eye hospital the doctors i see arent fully aware of KC and its limitations, and niether are they aware of new and developing treatments.

[Anne Klepacz]

Hi Kitty and welcome!
Just to add, as you say you'd like more information about KC, that if you e-mail anne@keratoconus-group.org.uk with your postal address, I can send you our basic information booklet about KC and the DVD of our 2007 conference, which covered all the latest options for KC, including the different types of contact lenses now used. As others have said, things have changed a lot in the last few years, so definitely worth getting another referral to a hospital with a corneal clinic. All the best.
Anne

[Sweet]

Kitty,

Hello there and welcome to the forum!

Sorry to read that you haven't been getting a lot of help, you should be offered a follow up hospital appointment. See your GP if there is a specialist near you who specialises in KC.

A lot of us suffer with glaring and halos. Without lenses I am not safe to drive and the halos drive me mad! With lenses in though I am much better and actually prefer night driving. The worst time for me is dusk, when it can't quite decide if it is dark or trying to be light!!

Wishing you all the best in finding someone who can try out some lenses with you. There are so many around now, that basically it is trial and error. What works for one person doesn't always work for another. So don't give up on practising with them!

Take care and hoping to hear some good news from you soon! Love Claire X x X

[Lynn White]

Kitty

If you are only wearing a correction of -6.50 and are really -13.00 then your glare is due to being under-corrected in your glasses!! What is more, with vision like that you would be legally below the driving standard. Obviously you may not have got that quite correct but you do need to urgently double check all that if you are driving!!

You would see a lot better in contact lenses and could wear the full power as these do not distort your vision as glasses do. You do need to be referred back into a contact lens clinic at the hospital OR find an optician outside the NHS who fits specialist lenses. Try the NHS route first because they should sort this for you>

Lynn

[GarethB]

Most GP's aren't aware of KC because it is so rare, but they will still know which hospitals in you area have corneal clinics.

Contact lens technology has really come along way in recent years so more chance of finding something that works for you.

I'ma having to use a mix of glasses and contact lens at the moment and glare is more of an issue for me than when I have my proper lenses (unfortunatly I broke one) but glare can be reduced simply by using a good automative glass cleaner on the inside of your car windscreen. You will be surprised how much muck you get off and all the fine dust adds to the scattering of light and exagerating the effects of glare.

[kitty]

Hi Everyone,
Thanks for all the replies.

I think I'm legal for driving although I may have got my numbers wrong. My vision in my right eye is pretty good with glasses but if I close that eye my left is really blurry. I think worry about driving is also what puts me off having an eye test, not driving in the dark will be hard enough but losing my freedom during the day would be a massive blow as I live in a little village. I'm starting to really worry as soon it will be dark in the mornings and early evenings and right now am travelling 3/4 of an hour on dual carriageways a couple of days a week and the bus journey would take hours but from the end of the year will be in my home town so not a problem.

I will make an appointment for another eye test, it's overdue anyway but I have been putting it off because the credit crunch has hit here and my income is uncertain right now but I know eyecare is something I shouldn't skimp on so I've been spending as little as possible and saving in case I lose my income soon. The cost of contacts does put me off a bit, to be honest I don't know how much they cost with all the solutions etc but it's probably not as much as I think. My optician actually has KC herself so has been helpful in explaining things to me and I think she can probably advise me better than my GP. I'll make the appointment for sometime next week if it's not all booked up. If contacts help my driving I'm prepared to try them again.

I will make an appointment with my GP for the end of the week after I have seen the optician. I live in central Scotland, does anyone know where the best place to ask for a referral is? I know the local eye clinic is not great, my sister had massive problems even getting a follow up appointment for my little niece (with a squint or something not KC) even after the GP, optician and health visitor all contacted them. Does the hospital help with contact lenses or is it something the optician does or does it depend on the severity of the condition?

I have found that dirty windscreen or any smears really increases the glare so I really should get my mr muscle out and give my windows a good clean.

I will also send away for the pack.

Thanks for all the advice.

[GarethB]

If you need contact lenses there will be a medical need for them which means if they are prescribed through the NHS, they are subsidised so you'd pay about £52 per eye and if your prescription changes in that 12 month period your new lenses are usualy free. Depending on the arrangement the hospital you get refferd to has they may contract out contact lens fitting to a high street optometrist. This is usually when the hospital does not have their own contact lens clinic. In England and Wales you can choose from three hospitals that can treat your condition but the question is, how do you know which is best.

Andrew is our Scotish correspondant, and if you contal Elizabeth Mair who runs the Scotish local group you will be able to help with what hospitals get good reports in your area.

NEVER use houshold cleaners on car windows, this is beacuse they have harsh cleaners whch may scratch the window and make glare worse and secondly the solvents used can seep between the window seal in start to cause the window to delaminate. Many people are unaware that a car windscreen helps give the car the rigidity it needs to pass its safety test.

Autoglym Glass polish or Meguirs glass cleaner are very good cleaners specifially designed for cars (and motorbike visors) and are readily available from most motor factors such as Halfords.

All the best.

[kitty]

I never knew that about car windscreens, will make sure I get a proper glass cleaner. When it gets really slushy it's also amazing how filthy the car gets and how going through the carwash makes seeing easier.

Got an opticians appointment now, not till the 27th so over a week of waiting and worrying.