UK Keratoconus Self-Help and Support Association

Hi Nick, and welcome to the group.

I'm 37, and I had my first graft back in January. Back then, my "other" eye was bad, but since then, the KC has now got a lot worse, so that even wearing an RGP lens i can barely see the top letter on the chart!
So KC doesn't always stop in the 30s!

Having said that, the operation was the best thing to happen to me in a very long time. I can see again with the "new" eye. It's blurred now, but with a bit of luck when I see the consultant next week she'll give me the OK to wear glasses - and then I'll be able to drive again.
The new cornea should be there for life; and will be if you look after it during the first few months especially, and that you're not unlucky to have a rejection.
Best of luck, and ask me whatever you like - it's what the group's here for!
John

Hi Nick,
I was diagnosed with KC in both eyes when I was 17. I was told then that I would eventually need corneal transplants but that I would be at least 30, maybe 40 before it was necessary.
It took me 9 years to get used to wearing lenses, but now I wear them from the minute I get up in the morning until I go to bed - sometimes up to 18 hours at a time.
I am 43 now and still no need for surgery. At my last Moorfields appointment, 3 weeks ago, I was told that I only need annual check ups now (previously every 3-6 months) and that my KC has stabilised.
So its not all bad news. Many of us are able to continue with contact lenses and no surgery. Hopefully, this will be the case for you too.
Good luck
Sue B

Hello All,

I wear lenses for my KC and although I use Bausch and Lomb soaking and cleaning stuff, I have never been advised to use protien removal tablets. I'm new to this site and I notice a lot of you all talking about them. What do you reckon? or shall I go back to my optician??

thanks Pete

Hi Peter (816), Welcome to the site. In answer to your question, you only need to use protein remover tablets if you get a big build-up of protein on your lenses, i.e., lots of mucus which is causing your vision to be very blurred and/or making wearing the lenses very uncomfortable. If you do not have this problem, then no need to start using the protein remover tablets. If you do suffer, then it might be worth trying them; you can get them from your optician. Often, as long as you have a good cleaning regime with your lenses, you should not have a need. Take care. SUE

Hello Dawn
It sounds like you need to try scleral lenses, the lens is filled with N/Saline which is often soothing, definately more comfortable than a standard corneal lens where your condition is concerned.E-mail me on:"astigle@aol.com" and let me know what part of the country you live in.

Hi Nick (812), Welcome also to yourself. Just to put your mind at rest, I have had KC for at least 25 years, probably longer, I am now 41 and am still wearing lenses; I juggle between corneal and scleral lenses but this has meant that there is no need at present for me to think about having a graft - which is irreverisble. In fact, I don't think my eyes have deteriorated very much in the last ten years, they just got fed up with wearing corneal lenses every minute of the day! Moorfields have been wonderful in helping me to manage the condition and have kept me off the operating table. You are in good hands; don't be scared to ask as many questions as you need to, particularly of Moorfield, but also of this site - we will help the best we can from our pool of experience of being a KC sufferer. Take care. SUE

In message <20020731195950.52073473F@pegasus.imagiware.com> qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com writes: understandedbly boring conversation with someone explaining
exactly what it is that I have. It's the usual phrase 'Well why don't you just where glasses' that tends to irritate and get me down.

Yes, isn't that maddening? I'm afraid I've got a line for that
one by now - in suitably squelching tone: "Glasses aren't any
good for this. That's why I've got the contact lenses." Pause. "Do you think I *look* like a person who'd wear contacts out of
vanity?" - as I'm short, fat, ugly and fast going grey, no-one
has yet come up with a smart answer to that!


through my twenties but slow down and hopefully stop worsening
into my thirties. Is this generally the case with most people?

Dunno about most people - but mine seemed to be fairly stable in my 20s (after I'd gone through a hydrops in each eye (separately) at 18 and 20) and has been deteriorating in the last 5 years or
so - maybe last 10, but more markedly of late (I'm now 41). In
my case, even more worrying than deteriorating acuity is the
increasing light-sensitivity, which is worse when I have the
lenses in (which is apparently the opposite way round from
normal) and a great nuisance as I've always worked with computers and now can't without special accessibility equipment. I'm not
100% convinced that this is all due to the KC or whether there is something else involved too, but Moorfields are studiously
uninterested in investigating other possibilities, however often
I raise this.

But - I shouldn't be too worried about any of this, as the thing they do keep saying about KC is how much it can vary and how
each of us is unique.


Secondly the transplant going by the sounds of it is something
that I would really like to avoid. However ultimately I realise that I may have to have it. What I would like to know is what
happens afterwards. If your eye excepts the new tissue does the transplant last for the rest of your life or will it need to be subsequently renewed if you like after so many years.

I've heard a lot of people sounding very uneasy about the
transplant beforehand, and then being very glad of the results
afterwards. So, if/when you need one, I hope you'll join them. The transplant, if it "takes" should last for ever - you won't
need a new one every few years, if all goes well. The only
reason you might need it redone once it has "taken" is if your
body suddenly decides to reject the "foreign tissues" a while
later. But even if it starts to do so, you can catch the signs
early, and it can be treated and prevented before it happens.

Welcome to the site - hope to see you around some more.

Rosemary

--
Rosemary F. Johnson

I will be out of the office from 18/07/2002 until 05/08/2002.

Please contact John Hopewell on 02476564785 if you have an urgent problem

Hi everybody

Just wondered whether there is anyone out there from the Isle of Man or is it just my son and I with KC here? I had a transplant in my left eye on 30 May, vision poor, but otherwise OK. I'm back to riding my horses but not lifting hay or show jumping for a while. Does anyone swim with their lenses in? I never have in case they wash out, but hope to holiday in Florida later this year - which will include swimming. Are there any goggles anyone could recommend please. Tubs

Dear Lisa