UK Keratoconus Self-Help and Support Association

Hi guys I have just recently been diagnosed with kerataconus and I am heartbroken. I have a very mild case and just started to wear RGP contacts like a month ago which takes my vision to a blurry 20/20 using both eyes but if I cover one it gets a little hard to read. The most upsetting part is that I currently am a Flight Instructor and I am afraid that I will loose my medical certificate which will end my life long dream of being a commercial pilot. So I want to know will my vision get better after wearing the RGP's for a few months. And to anyone that wears RGP’s is your vision better for just that split second after you blink, because that’s what happens to me. I blink my vision gets a bit better and then its blurs up a bit, which is more noticeable at night with the glaring lights, so is that normal? I am also thinking about getting the C3R treatment done, so does anyone know how much does that cost? I live in New Jersey USA but I am interested doing it in Dresden, Germany where I hear it’s the cheapest and best place to do it. Also if anyone has any contact info for them I would greatly appreciate it.

Hello Sebastian, and welcome to the forum.

If your vision gets better after a blink, then it sounds like a team film issue - either the larger tear coverage is helping to smooth out the bumps on the cornea, or if it happens with RGP lenses in, then they may be moving around too much. Make sure you tell your CL fitter.

As for making your eysdight better, that was a theory a few years ago, but seems to be unlikely now.

You should be able to manage for a long time on RGP corneals or any of the other KC-special lens types before your career is affected.

And at least in the UK, if your best corrected vision would stop you from doing your job, that is often an indication for a graft.

Best of luck.

Sebastian

I would consider speaking and meeting with Boxer Wachler over in the states.....but if cost really is an issue then dresden may be the better option!

In terms of vision from RGPs' its realy hard to say...RGPs and there relative success depend on the bespoke KC affected corneas....

As you have mild KC have you considered the Soflex or Kerasoft contact lens? That may be a better option?

Have PMd you C3R details

J

Hi

I haven't actually gotten around to wearing any type of lens yet so I won't know how they felt. From your message, I guessed that you are in your late teens, since you had only been diagnosed not long ago. From most online blogs I had read so far, KC is still very mild during this phase of your life so don't be disheartened. Besides, your vision has been corrected to 20/20. As long as you take good care of your eyes (ie not rubbing, keeping late nights etc), I'm sure you can enjoy some ten more happy years down the road before you get to their fluctuating vision nightmares.

-C-

Sebastian,

KC is unpredictable, most people cope well with lenses of one sort or another. My KC has been stable for the past 2 years now. It is quite common for KC to settle and remain unchanged for long periods and then change again.

As you have only had lenses for about a month, the cornea may still be taking on the shape of the lens. My right eye took about htree months before I got passed what you describe. The lens then sat with far less movement and I got good vision which did not change when i blinked.

Thanks for all the replies and Thank You for the C3R details jayuk. Yes I am 24 years old and I have spent alot of money on flight training and school so a career change for me is not an option. Looking in the mirror when I blink yes I do notice the lenses move around. When I blink the lenses move up and then they slide down and then i get the vision change. I also notice a this slight sensation which is hard to describe, sort of like a pop. It seems like when I blink the lenses get pressed down on the cornea and then they release?? I dont know. Also does your vision improve after you get more adjusted to them as your cornea changes shape?

RGP lenses are supposed to move around - that helps to let the cornea receive oxygen... but what you're saying sounds to my untrained eyes like a lens which may be poorly fitting. Any of the optoms care to comment?

Sebastian,

Your lens is moving just like mine still does when it is first put on, but my lens sits off centre so as the lower lid moves up slightly it rolls the lens up and to the right. If the air is dry, it can roll so far round it can not return. For me the movement reduces as the eye settles into it.

As you are fairly new to lenses it could be that your eyes are still adjusting to the lenses. If this carries on, you might want to get th optom to try and tighten the fit so the movement is not quite so pronounced.

Hello there and welcome to the forum.

I think that it is great news that you are getting 20/20 vision and wish you all the success on flying!! A really brilliant career there!

As for lenses they may be a bad fit, but as you are new to wearing any and this is your first lens i wouldn't panic. It is difficult at first to find a lens that is suitable and sometimes this may take a few trials to make sure. A fitting problem can be changed easier than trying to get better vision so i would say to stick with it and things will get better the more you wear them and practise!

So check in with your optometrist and go from there. Untl they see you it is difficult for them to assess how the lens will sit on the cornea as well so they can see what needs to be changed. Best of luck! ... Sweet X x X

Thanks I really do hope things will improve because this condition has brought alot of stress upon me. I also read that if you get the C3R treatment that your cornea will shrink a little bit. Does that mean that I will have to get my contacts refited again?