It would be so nice to be able to see...

[Clarisa]

First thing in the morning!

Hello everyone I'm new to the forum. I was diagnosed with KC 8 years ago at my optistion then transferred to Moorfields, at first the change in my eye sight was very slow. I have been wearing Scleral lenses for a year and now I can't see anything without them. Even though 8 years seems like a long time to get used to having KC, only within the last 12 month has it actually set in. My older sister has KC and has had corneal graphs on both eyes. A year ago my vision was reasonable I could drive without any sight aids and now I'm dependant on Scleral lenses even just to walk around my house.

Initially I wore glasses, then Gas Permiable lenses but I couldn't get used to them. So I tried piggy banking lenses; that didn't work either so Sclerals were suggested. At first I couldn't cope with Scleral lens but as my eye sight deterriated I had no choice but to persevere with them.

I know that I should be greatful for having sight but sometimes, especially when I'm having problems putting the lenses in or trying not to get air bubbles in them; I can't help feeling upset. I often reminise about the days when as soon as I opened my eyes in the morning I could see everything in my room and when I didn't have to worry about falling asleep with my lenses on whilst watching TV.

Does anyone feel the same?

[musa fares]

hi, clarisa
l completely understand u eventhough i didn't use any lenses before. but am about to use it very soon.
my older brother has the same thing as u. and he also has the same feeling about not to fall asleep while watching TV or just because he feel lazy to take it off before sleep.he can't drive any more exept by lenses but unfortunatly he can only wear it for 6 hours per day.
me also thinking alot about such matters because am about to wear RGP, but now am totally dependent on my glasses and like u l can see nothing without. now l can't play my favorite game - football- because lm worried about my glasses not to fall down and if l took it off l can't see.
remember that a lot of people r blind so we have a great grace.

[GarethB]

Welcome Clarissa,

For the past 10 years I have not been able to wake up and see the world clearly. Now seeing the end of the bed is hard! This sudden deterioration has only been n the last 12 months.

By six pm my lenses are out completely unless I have gone part the day earlier with no lenses. Right only last for 4 hours max but we are having trouble sorting that.

Still scare my wife as she finds it hard to understand why I can carry on nearly normal witout seeing. My friends are surprised at some of what I can determine about my surroundings by touch. At a restraunt recently I complained about the cutlery being dirty. I just ran my hand down the surface so I knew which was the correct way up and felt dirt. The manager insisted I could not have a sight problem if I could tell there was dirt. 5 minutes earlier I had asked for a large print menu which was not available, but at least the waitress offerd to read it for me, so it was just the manager that was a pain. Cutlery was replacd in the end.

Concentrate on what you can do and you will soon be able to adapt to new situations and lenses can be considerd unnecessary. I only need mine to drive and to go into the laboratory, both on safety grounds.

Regards

Gareth

[John Smith]

It certainly amazes me that any restaurant manager would argue about changing cutlery that the customer complains about! I'm not sure I'd go back to them even without the "refusing to believe" incident!

I certainly agree though about the ability of the brain to learn to cope without lenses - my wearing time from a single scleral maxes out at about 8-10 hours, although I can't really do that every day; as I pay the price the following day(s).

Like you, I'll wear the lens when I really need it - when driving to a friends, I'll put the lens in. Take it out as soon as I arrive, and then reinsert for the trip home. Sure, it's a bit of a drag, but it means that I will retain an amount of freedom.

We all develop our own coping strategies, and try not to let the KC rule our lives. The first step with this is to admit to others that we have a problem; it then gets a lot easier to admit it to yourself!

[jayuk]

Clarisa

As reflected in the other replies, I think alot of us know EXACTLY what you mean. I remember when at college Id used to get up and not worry about having to put anything in my eyes, or worry if I was about to have a good initial eye day!.

But what I found in my case was that as the condition changed Id be grateful of the good eye days!....I consider myself lucky as I have only REALY had major problems in the past 15 months...the other 8 odd years I was doing well with a mixture of various lenses.

I think there are a few things we can now look forward to with regards to KC

a) the lens options available are now more so than was even 5 years ago
b) the treatments out there are increasing (albeit types of grafts, types of corneal rings, ways in which to bespoke lens fitting, etc)
c) the help available to us from the likes of RNIB etc

I can tell you something, Im glad my condition got worse NOW than say 10 years ago......as the options we have now are far greater.........

Hope that helps

J

[Clarisa]

Thanks to everyone for your understanding and encouraging comments. It may have seemed like I was being a bit ungrateful because I do have some sight and I am not blind. I was just having a bit of a moan and where better to moan than with people who understand what you are going through.

Thanks Again

[John Smith]

Hello Clarisa,

There's a generally accepted fact about those with KC - we won't go blind.

Ok, there are different levels of vision, some of it "not useful", but with correction, or (in the extreme cases, surgery AND correction), those of us with KC can look forward to a completely normal life in most cases.

So please don't apologise for not being blind - everyone with KC is welcome here!