UK Keratoconus Self-Help and Support Association

Hi All,

I was told by moorfields about 2 months ago that i had KC in one of my eyes. The whole process of diagnosing this was one of the scariest things I have done so far. I went to work one day and couldn’t see the screen no matter what I did. I just found it so scary not being able to see my screen and it being all blurred. This literally felt like it happened all of sudden. I went to Moorfields A&E who then said I need to see a specialist but he was quite certain I had KC. I had already worn glasses, but they were very low in prescription. My optician thought I had astigmatism in one eye but never told me that it would ever get this bad and I should keep an ‘eye’ on it.

I got a new set of glasses, which only has prescription in one eye (my non KC eye) this has let me cope for the last 2 months. I went to Vision express and they must have put a high strength set of lenses on it was the first time in years where I could actually see out of it. This is when it hit me that I had such a problem with this eye. Unfortunately, I cant wear glasses to correct as I was getting blurred vision as one eye has high KC and the other does not have it and I have a low prescription.

What I found strange was when I went back to work the screen was fine and when I put on the glasses it made it worse. I was wondering if anyone has experienced vision like this, where one day it is really bad and the next day it is OK? The specialist I saw said it may be due to stress (Im sitting exams at the moment and my job is stressful like im sure many of you out there).

I have an appointment to see a contact lens specialist on Monday and I’m a bit nervous about it all. I’ve never had contact lenses and don’t even like putting mascara on my eyes! I can’t imagine how I will put a lens anywhere near it. Everyone is telling me it gets easier. I have also heard that the lenses they give you are very uncomfortable and its like putting glass in your eyes. Is it really that bad?

I don’t know what I need to be asking the contact lens person on Monday so any advice would be greatly appreciated. I know it’s a bit short notice.

A bit worried

Thanks

Anita

Hi, sorry to hear you have been having problems and are quite concerned.

I've had lenses now for about 9 months. I have a Kerasoft in right eye and normal lens in left eye. It was quite hard for me to touch my eyes before putting in lenses and I did struggle for the first week and they were quite uncomfortable and did feel like a pieces of glass over each eye. However, I very quickly got used to putting in and taking out the lenses and it took about a month for my eyes to adjust to having lenses in. All I can say is that it will be a pain for you, but before you know it you will forget you are wearing lenses.

I can now put in lenses and take them out easily and most days I don't even know they are in. I just had to be patient over the first month. If you have any other question feel free to ask.

Alex

Anita

Maybe you need contact lenses and reading glasses. Wrtie down as many questions as you can think of and make sure that the contact lens specialist answers them all. Sometimes the answer may be that this or that is a question for your ophthalmologist.

I'd be asking about contact lens materials as well as contact lens type. Ask if the lens you have is fitting well, if not, then ask about other lens types that may fit better. There was a time when the haptic (or scleral) lens was quite a la mode for people with KC. Nowadays various soft lenses have been developed.

All the best

Andrew

Hi Guys,

Thanks for your advice. Very helpful. The ophthalmologist said a rigid gas permeable lens would be best for me, and she actually managed to put it in my eye without me screaming (well not too much! ), but she also put anethestic in my eye so i couldnt feel it.

She said that i did'nt really need a lens as i can cope with seeing from the other eye, and they could just monitor it in 6 months. However, i thought one day im probably going to have to try it so i got her to order me a lens. Friends who wear contacts tell me i should probably get a lens for the non KC eye as my brain will find it hard to adjust with just one.

Alex, does it not feel weird having two different types of lenses in each eye? Im guessing i will need to get a soft contact for the other eye.

The ophthalmologist 'predict's i wont wear them as the hassle of them will not outweigh the benefits (as i can cope without them) We will see!

Good 'advertising' for this site though she mentioned it!

Hello Anita

I am glad that you had such a positive outcome with the ophthalmologist at Moorfields. I am sure that you will quickly settle to wearing contact lenses.

In the meantime, why not print off the information leaflets from this site and make sure that everybody who needs to know, and who is in a position to make special provision for you, is aware of your condition and what they can do to help?

All the best

Andrew

Hi,

Good to hear things are going well. I response to your question about wearing different lenses, I thought I would find it weird but I never have. My opthamologist gave me a choice because the vision in my left eye is near perfect, but she recommended wearing a lens in the eye just because otherwise it might feel weird only have a lens in one eye. It just helps to improve my overall vision slightly, which I feel is very important for driving and work to have one eyes which is 100%. I personally am happy wearing different lenses, its never bothered me.

Alex

Anita,

Hi there! Sorry to hear about your recent diagnosis but glad that you went to Moorfields early and found us as well!

Having good vision with just one eye is common and a lot of people wear just one lens. I was only able to wear a lens in my right eye for 15 years as I had too much scarring in my left eye which wouldn't tolerate a lens. Since then I have had my left eye grafted and can wear a RGP lens. I don't wear it often as I don't see much with it on it's own but with my right eye it is better. I now see four lines with a lens when I couldn't see the light box before!

My right eye manages well with piggybacking a RGP and a soft lens and I wear just this lens which you can get used to. Lenses are uncomfortable at first but you can get used to wearing them. Build up the wearing time slowly and things should be fine.

Hoping you work lenses out soon!

Thanks for all the advice guys! I guess i will wait until my lens comes through too see what happens next!

Deal with each situation as it comes. It's good too hear that there is so much out there and you are getting on with everything as best you can.