New to this, but not to KC

[John W]

Hi

I am 22, have keratoconus in both eyes that is corrected by soft (kerasoft) contact lenses. I was first diagnosed with it when I was seventeen and see a friendly guy at windsor hospital every 6 months for a checkup.

I am a tad stubboprn with my lenses and dont always wear them, mainly because a small squint corrects most ghosting, but I always wear them for driving.

My mum who is 53, finds glasses correct her vision better than lenses, She only has a mild form of it, so she has been told.

I guess what I want to know is, from your experiances, when does the KC stop progressing, I have been told that my lenses, really dont have much power by my optician. But because of the ghosting, seeing those lines on the sneller chart is a flaming nightmare.

Generally I would say my vision is not that bad, colour contrasts cause a big problem, but on a cloudy day, I can make out trees a long way off, can clearly see cars, bikess and traffic lights.

Im just hoping in a way it doesnt get too much worse :S

[John Smith]

Hi John, and welcome to the forum.

I'm sorry to say that the answer to your question is "nobody knows" - because as a condition, it progresses differently in each of us.

You may have no further progression at all; or you may have severe progression that requires surgery to correct.

Only about 10% of KCers get to the graft stage though, so that is unlikely.

It's interesting to read that your Mum has some degree of KC though - is it just the two of you in your family with KC, or is it a more common trait?

[Andrew MacLean]

I think at one time they used to say that KC was self-limiting. Now they say that it is "unsually self-limiting".

I had my first graft at age 53, but I had been dodging it for thirdy years

Equip yourself with the best information available. Weigh the options and take control of the management of your condition. I found this site an excellent resource, and had it been available to me during the years that I was dodging surgery, I do not know whether I'd have waited so long.

Andrew

Glood to see you here

[GarethB]

John W,

We all hope KC does not progress, but to be honest the management of KC is always progressing.

The options available to offset the need for a graft are many. So should the worst happen and your KC progress, you are already familier with lenses and this actually suits most people throughout their life with KC.

Had these options been available 20 years ago, I would never have needed the graft when I did and quite possibly would still be without a graft.

As John pointed out only 10% need a graft and this is just another management technique to make it easier to correct the vision.

[John W]

Thanls guys, my doctor doesnt seem too concerned about mine getting much worse as he said that I am young and as I get older there will become simpler ways besides a graft to manage the problem. He said new techniques of fitting a rigid disk behind the cornea etc are to some extent approved in the USA and will no doubt make their way over here before long.

Im lucky in at the moment, my condition is extremely mild.

In answer to Johns question. It is as far as we know just me and my mum. Back 3 generations on my mums side there is no appearance in any genetic relations that are old enough to have developed it, which in our massive family is about 50 people.

On my dads side back 2 generations, to his knowledge no one has it, his side much smaller and no appearence in about 10 people.

[Alison Fisher]

Hi John.

I sometimes think the worst thing about KC is not knowing how it will progress - or not. Over the years I've spent way too much time wondering and worrying about it. I know it's a waste of time and I need to just go with the flow but when you're in that frame of mind that's far easier said than done isn't it?

[GarethB]

Going with the flow is a good mind set to have.

I do think stress can help agrevate any medical condition in a variety of subtle ways.

[Sweet]

Hi there, am glad that you have found us and are able to find out some info! I just wanted to say that i was also a patient in Windsor hospital and i was very close to getting a graft there but then i backed out! Now it is eight months after having a graft, even though i went private this time, but this time it felt right and hopefully my vision will improve.

Hoping that your KC remains stable, Sweet X x X