Speed of KC progression

[dizzzy]

HI
I'm new to this group but I have had KC for about a year. I am currently using RPG contact lenses I have been presisting with them also for about year they are very irritating and I sometimes find that I need to have a break from the for a couple of days as my eyes get very sore.

My optician says there is nothing more he can do with my glasses but when I were them my vision is still blurry (not as blurry as without them) and I get some ghosting, is the ghosting normal ?. What I would like to know is there any info about how fast KC progresses, I realise that there some KC sufferers that have periods where they have no progression. but when it is progressing is it at a known speed or does if differant from person to person.

The reason I ask is I currently work with computers and even though my my employer has been very supporting I am finding that I am strugaling to read the monitor. I currently have a large monitor and still somtimes on a bad day need to use windows magifier to help me read the screen.

Thanks in advance
Matty

[Anne Klepacz]

Hi Matty and welcome.
Ghosting is normal - the result of your glasses not being able to cope with the irregular astigmatism of KC which your lenses do a much better job of correcting. As for progression - yes, everyone is different so there is no 'standard' rate of progression. The great majority of people with KC manage pretty well with a variety of different contact lenses and rapid progression seems to be the exception rather than the norm. There are lots of people here who have been wearing lenses for many years and many whose condition does stabilise.
Have you found the leaflets on KC at work and How the Law can help you at Work on our home page? It's worth getting a workplace assessment done to see what else could help you - there are lots of possibilities these days with specialist software or just minor adjustments to your screen which could help.
Our 2007 conference included talks on the various options for KC these days, including all the different types of lenses available. If you PM or e-mail me your postal address, I'll send you a copy.
All the best
Anne

[dizzzy]

Thankyou for your reply,
I have found the leaflets on KC at work and the law and I will PM you my address.

Thanks Again for you help
Matty

[GarethB]

Dizzy,

Contact you occupational health advisor and get a new display screen equipment assessment which will help with any extra equipment you need.

Are you lenses through the hospital or a hightsreet optom?

Taking regular breaks from the PC will help you, the DSE regulations recomend little and often, I work for 30 minutes max at the PC and then do something else for a couple minutes. This might be collecting a couple of printouts, topping up my glass of water.

I find this and drinking at least 2 litres water a day really helps with lens wear along with lubricating eye drops too.

[dizzzy]

Gareth

My Lenses are from an high street Optrom and by occupational health advisor do you mean the oc heath work ?. It has been around six months since I have had my lenses checked but I will be making an appointment shortly as my sight has deteriarated. When I asked about being refered to the hospital about my KC they said that it had not progressed far enough and the hospital would not do anything. That was a year ago and at the time I took that to be a good thing but I will be asking about it again when I go back shortly.

Thanks for the tip about drinking more water It occurred to me that it would make a difference.

Matty

[GarethB]

Dizzzy

You are correct the occupational health at your place of work.

My local optician refers all cases of KC to the hospital and leave it to them to decide if they continue with care in the community or are treated by the hospital. My hospital has a contact lens clinic and so has access to a wider range of contact lenses than my highstreet optom.

[pepepepe]

It might be a good thing to get in to the hospital system as they may gewt you a contact lens you can tolerat for longer, it might be the fitting, the experiance needed to do that for KC, which a contact lens Dept. of a hospital will have plenty of

Pepe

[Lynn White]

Hi Dizzy,

Hospital clinic coverage for NHS Contact lenses varies around the country from Moorfields, who see around 7,000 keratcocnics a year to those who may only have an optom in the clinic once a week. Some hospitals may have no clinics and refer out to private contractors. This may explain what your optician said about the hospital not doing anything because your Keratoconus is so slight. So well worth going back and discussing this with them to get a clearer picture.

Once you get an idea about local provision, you may then want to discuss this with your GP who has the ability to refer you out to other hospitals with more experience. Ideally, you would want a referral letter from your optometrist to explain your situation.

Unfortunately, this can all get a bit complicated because the country is split up into Primary Care Trusts (PCTs) and hospital contact lens clinics are different in almost every PCT area in terms of the provision they give and how they deal with keratoconus. Members here can often only give advice as they experience it in their area and generally I would say to anyone reading this post, do find out from your optometrist and your GP what the situation is in your own area even if you are fine at the moment. If you have problems in the future, it is well to know what is and what is not available and where you would need to go if you needed more complex treatment.

Although all this may sound a bit arbitrary, remember that it is natural to find more specialisation in areas of high population(eg London/Moorfields) and less in lower populated or far flung areas (like coastal regions). Keratoconus also is a condition that tends to cluster, so some areas may have hardly any whilst others have more than the national average.

Lynn

[dizzzy]

Hi

Thanks for your reply Lynn,
I am from the Grimsby area and there is no specialised eye clinic at Grimsby Hospital that I am aware of. Also I have not been to see my GP in a number of years and last time I passed his practice the windows have been boarded up so I supose he has moved or closed and not informed me.

I am in the process of moving doctors so that will at least solve one problem.
I had new RPG lenses fitted a couple of weeks ago and they are no better comfort wise then my old ones but I can see a lot better when I wear them even if it is only for a few hrs at a time. I went back for a check up last Friday and they are ordering another set of lenses hopfully they will be a better fit and more comfy.

After a lengthy discussion with them they agreed that I will need refering to the hospital soon especially if this next set of lenses is no better. As you said lynn they said I would need to go through my GP. I have got to admit that when she said about refaring me to the Hospital I felt that sinking feeling in the pit of my stomach, even though it is what I wanted to hear. I supose it is because I am not looking forward to it.

I am currently waiting for a phone call to arrange a fitting when my new lenses come in.
Hope it is soon!

Matty

[GarethB]

Matty

I felt the same when i was first reffered back into the hspital system. However I found the options available within the hospital were far superior than my highstreet optom and they are extremely helpful and patient with me. Over the past four yeasr i've been sucha regular I am on first name terms with everyone in the contact lens clinic and most the consultants too!

My old highstreet optom now works at the hospital so I know I'm in good hands.

Hope the new lenses work out for you but there is nothing to fear from being in the hospital system.