Just diagnosed and really scared

[andypeers]

Hi all, new to the forum and the condition. I was diagnosed about 12 hours ago now at my local hospital. i've been reading lots of forum posts relating to this condition and now im really worried. I have seen countless discussions about people getting transplants and other things. this prospect frightens me as i do worry about losing sight in my eyes.
As i havnt got my contacts yet (or even been fitted) i cant say how much i will wear them as i get the impression they can be rather irritating.
i am 20 and noticed the condition about 2 years ago now. How badly have other peoples eyes deteriorated? I went on google images and saw some of the pictures of this condition and, frankly, they scare me alot. does anyone have the extreme "cone like" eye shape like on google or is this literally in extreme conditions?
Also, how quickly have eyes deteriorated? i heard that if you wear the lenses or not, the condition will still occur at the same rate?

Thanks for reading and any responses!

Andy x

[Anne Klepacz]

Hi Andy and welcome to the forum,
It's natural to find it scary, being diagnosed with an eye condition no one has ever heard of. But it's also very easy to get a skewed idea of what KC involves when you read forums like this one. Bear in mind that people tend to post here when they're having problems or need a bit of support. We rarely hear from people who manage very well with their KC and with contact lenses! How much keratoconus progresses in any individual varies a lot - for some people it stays quite mild, for others it progresses for a while and then seems to stabilise. Only around 1 in 10 of people with KC ever get to the stage of needing a corneal transplant. So the majority of people manage pretty well with contact lenses. And there's been a lot of progress in options for KC in the last few years, both in different types of contact lenses and in other options.
It's true that wearing contact lenses doesn't stop KC progressing if it's going to, but they usually make a big difference to the vision. It takes a few weeks to get used to lenses and to build up the wear time. And it can sometimes take a while to get the best fit and the best type of lens for your eyes. But this is the place to come to ask questions and get support while you're getting lenses sorted out.
And if you'd like our basic information booklet about KC and the DVD of our 2009 conference which goes into all the current options in more detail, just e-mail your postal address to anne@keratoconus-group.org.uk and I'll put them in the post to you.
All the best
Anne

[Andrew MacLean]

Andy

Welcome to the forum.

I am afraid that you have stumbled into one of the problems with a forum like this: people only post if they are having problems! The vast majority of people with keratoconus never really encounter any problems; they get by either with glasses or contact lenses and their condition stabilizes when they hit their mid thirties.

For some there can be a problem finding the right mix of fit, lens type and lens materials for their contacts to be comfortable.

For only a very few there is the prospect of transplant surgery. For some of them, new management tools may be able to postpone this eventuality.

Every good wish

Andrew

[andypeers]

thanks to both of you for the replies! they were very helpful and have put my mind at ease im glad that the condition wont always go as far as transplant!

Also, thanks anne for the offer of the information. i shall send my address to you now.

thanks again for the kind reply

andy x

[liam82]

Mate, i was disagnosed earlier this year too- and my best advice would be to you - dont think too negatively. Its not as bad as you might think it is, or i did, and theres a range of options to manage it and also theres great places like here for support and advice.

Hope it all goes okay for you mate!

[andypeers]

thanks liam82
im very grateful for the info that everyone has given me so far on this forum! i think my mind has been put at ease

thanks everyone
andy x

[Ian Anderson]

Andy

I was about your age when I was diagnosed. I'd suspected something was not right with my vision but normal eye checks found nothing wrong (I was in Rhodesia at the time 1979 or 1980)

Anyway after attempting RGP lenses for about 9 months I gave up - 4500 feet above sea level, dry dusty atmosphere, extreme sun etc (Max wear was about 14 hours)

Later I moved to the UK ad stared wearing specs for reading computers as I started getting headaches (Accountant by trade) and eye strain was what it ws put down to. This was 1992 in Kungston (surrey) and the optician never even mentioned KC. So either Rhodesia was way ahead of the curve or the particular person I saw was a numpty!

2 years later and I want the prescription re adjusted - constant staring at computer screens I believe do not help but this puts bread on the table! That optician threw a wobbley- wanted to stop me driving etc. and sent me to Kingston eye hospital to be checked over.
4 months of going through the NHS - never seeing the same contractor twice - and they tried to fit RGP's again with zero success (2 hours fit at max and that in a darkened room)

Over the Xmas break 1995 I went to visit the folks back in Bulawayo (Rhodesia / Zimbabwe) and went in for an eye test when I was there. Opthalmologist (as he was now called - used to be optician) tested my eyes and said no way would he even suggest contact lenses as he could correct fully with specs.
He had a piece of kit that did a laser eye map - his explanation is that it took about 6000 readings on each eye and calculated the exact lens that was required.
He then checked the machine's specification manually and could not improve on it.
I got my glasses and returned to the UK

Next visit on the NHS merry go around and I insisted I saw the senior consultant. Went in and he took measurements etc. and said he could not do much. I gave him my "Zimbabwe glasses" and said please check this prescription. He went away and came back and said - who are they for? I said me - put them back on my face and read "made in hong kong" on the bottom of his chart!
He took the glasses and retested them - came back ad rechecked my sight - still bottom line of chart and then said "sorry I have wasted your time but I could never get close to that prescription!" No need for any further visits! I said about the "laser eye mapping" and he said he had read about it but because it was not British technology it was not accepted in the UK and they could not use the machines - NICE checking of methods etc.

Anyway up to date
Now 50 years old fat git and 4 eyes
A couple of opticians in the UK have tweaked the prescription I got in Africa in 1995 to account for general aging and I'm still happy with my sight.

So after all of this - don't panic it is not always as bad as people make out (I too had been told to expect grafts with 5 - 10 years in 1980 / 1982 but still have my own eyes)

I also know the Laser eye mapping is now available in the UK - I found it in 20 - 20 optical store in Tottenham Court Road a few years back - don't know if they are still there - but they needed to get in a South Africa trained opthalmoligist to use it to get readings on my eyes. He confirmed my Zimbabwe prescription wwas correct. No doubt as this technology is about 20 years old it will become more available and get used correctly.

Now I'll probably get slated because I slated the NHS and the UK optician / opthalmologists - hey I have written my experience

Hope it helps

Ian

[andypeers]

thanks for your story it's good to hear the technology and research has improved over the years
x