UK Keratoconus Self-Help and Support Association

Hi,
I was diagnosed with keratoconus a few weeks ago after starting to get really annoyed with the halos around light/double vision/glare which i had noticed had gotten a little worse over the last few months. I was pretty shocked when the optician told me this was what i had, i knew a bit about it already from trying to find out what was causing my poor vision, esspecialy at night as driving had become a nightmare. Anyway, I've seen a consultant and has reffered me to get contacts from a opticians that he highly recommended. He unfortunetly couldn't tell me much about the different treatments. What i want to know is if there are any long term side effects to things like C3-R and intacs. I'm only 18 and i know it's early days, i just want to know whats open to me maybe in a few years time if i continue to progress (consultant put me at around 5 on a 1 to 10 scale). Would it be wise for me to wait a few years before considering any of the newer treatments? Does C3-R require top-ups? I am by no means considering running into things too quickly and I'm not being hasty, i just want to know about what's open to me. My plan is to stick with contacts, my contact appointment is this Thursday, before starting to consider any form of treatment like intacs or C3-R esspecially since C3-R is pretty new (consultant recommended waiting untill at least a few thousand have had the treatment). I also would like to know how much more likely it will be that i will one day need a graft since I've been diagnosed quite young? Thanks for your time.

CrAiG

Hi Craig

Welcome to the forum. The diagnosis is always a bit of a fright, but you have survived that and found your way here: well done.

Neither C3R nor Intacs would necessarily mean that you would not need to wear lenses or to have a graft. Your consultant is probably right; if you can wait perhaps that would be best.

The great majority of people with KC never need surgery of any kind. If you do need a graft then don't panic! But, for the majority there continues to be good corrected vision wearing contact lenses.

Yours aye

Andrew

Each person with KC has a different experience, but as Andrew has said for most surgery is not required and is not the norm.

KC, depending on its severity, can be managed quite well with glasses or contacts and most people manage their lives well.

With INTACS it is rare that you will regain useful sight without the need to still wear glasses or contacts, however it does provide the possibility of gaining a fair amount of useful sight back with the aid of glasses or contacts.

I have recently had INTACS fitted to my right eye and, despite getting an infection immediately post op, have noticed a huge difference in my aided sight between pre op levels and post op levels. My full experience of INTACS to date can be found here:

http://www.keratoconus-group.org.uk/for ... php?t=2769

With that said not every KC patient is suitable for the fitting of INTACS, and it should be seen for what it is, a procedure to help with KC not a cure.

From past group surveys, it appears that over 2 thirds of people with KC cope perfectly well with glasses or contact lenses and never need surgery.

There was a time when the people here were at the extremes of KC, but more people such as yourself are coming for information and are probably more representative of the general KC population.

Hi Craig!

Welcome to the forum though i am sorry that you need to join us for KC. It is hard to be told that you have this condition but as you will read here there is a lot that can be done.

I was diagnosed at 14 and wore a contact lens with no problems for years. I have had a graft but it was on an eye that I have never had vision with, not because my eye got worse.

I would say to try with contact lenses as there are so many now. It can take a while to get a perfect fit but it is well worth it in the end!!

Wishing you all the best!

Thanks alot for all the replies. Yes it was a bit of a shock at first, but once i realised that i would never go completely blind and that there will always be the option of a graft which I've read is the most successful of all transplants I was a bit better. I've had these symptoms for a while, the shock was that they've been getting worse and i haven't even noticed and that it may continue, but I've came to terms with it and accepted it. I am of course going down the contact lens path first, I was just curious about things which i may consider in years to come. To be honest the hardest parts I've found have been not being alowed to drive untill i get good fitting contacts and also having to explain it so many times, lol sometimes i wish it was my little finger that was changing in unussual ways - it would be easier to show. As I'm sure you'll all know it's so difficult trying to explain how you see with KC vision!

Thanks

CrAiG

Craig,

I just people the front of my eye is damaged and a contact lens is the only fix in a matter of fact kind of way.

This satifies most peoples cureosity and only those genuinly interested will ask further.

As long as i am treated like a normal person I am happy.

LMAO!!!! And Gareth we treat you like a normal person here??!!!!! LOL!!!

Sorry! Couldn't resist that one!!!!!!!!!!!!

....and we treat Sweet like a freak

Could not resist either

Awwww meany meany bean!!!!!!!!!!!!!!!!

LOL!!!