UK Keratoconus Self-Help and Support Association

Hi this is my first post

I wanted to say:

1) I hate wearing contacts because they don't give perminate vision from the time you wake to the time you sleep, or even get up in the night, go for a shower, seven days a week, 24 hours a day. Contact lenses really only give "part-time" vision

2) There is a daily infection risk

3) Can't be good on a "at risk" cornea, an caused a few early transplants to happen

4) I don't like being scared by my Optician to stay in Contacts and not do less invasive surgey due to the risks, its a time old scaremongering they do, its helps their business, its to keep him in business, if you don't want to wear contacts the only other thing is surgery really.

I just wanted to say this to "someone"

pepepepe

Contact lenses can be painful, especially if they get a bit of dust behind them, and you are right; they do only give 'part time' vision. May be the time will come when people with Keratoconus will no longer need to wear contact lenses, but for many of us that day is so far away that it is hardly realistic even to contemplate it!

For people developing keratoconus now, there may be other remedies: some will have CXL and their sight may never deteriorate to the point where they need to wear lenses; some will have INTACS, some will have a combination of these, and some will benefit from treatments of which we have not yet even dreamed.

Meantime, for many of us (possibly for most) contact lenses are the best alternative. I wore them for over twenty years before I needed transplants. I am wearing one again on my left eye, after a transplant. (I can make do with glasses on for my right eye). In between times I was registered blind.

I think I love my contact lens; it certainly gives me sight that I would not have otherwise. Sometimes I hated putting my lenses in, sometimes I hated the way they would ping out without warning, or disappear round the top of my eye, sometimes I hated the pain I got if grit or dust got into my eye beside my lens, but most of all I think I loved being able to see.

Lots of us on the forum advise against having surgery until all other options have been exhausted. Some who are suitable for CXL have it almost as a prophylactic treatment.

Love them or hate them; they help us see!

Yours aye

Andrew

ps welcome to the forum.

Hi, and welcome ot the forum!
Couldn't agree more about the hassle of contact lenses - or about the "part-time vision" problem.
I;ve long dreamed of being about to wake up in the morning and see what the world looked like without needed all that time to wake up enough to think my eyes will do anything other than go on strike at having a lens slapped into the so early inthe morning.
And dreamed even more of eing able to wake up with a bump in the middle of the night and actually see whther that sudden thud was really a burglar or only local cats out inthe garden.
and as for the lenses starting to play up.......oh dear!
Not so long ago, I was looking around me as I went along and reaised that the world was starting ot look rather misty... and there was something going wrong with a contact lens.... and I really really wanted to take it out of my eye like, now if not 5 minutes ago. Or half an hour ago.
Unfortunately..... and I admit I may be a bit unusual here..... at the time I was plodding along a path through the Essex fields on board a horse.... and we had two further fields, a footpath through the woods, then the usual struggle trying to unlock the padlock to the gate to the track down to our stable yard with the reins in one hand and the keys inthe other, then down the track to the stables, before I could put the (unsaddled) horse back in his paddock and go and get the lens case and get THIS WRETCHED THING OUT OF MY EYE!!
As for the "professionals"..... Yeah, I hear what you say.
Unfortunately, once one is established in contacts, there isn't any surgical treatment yet that will guarantee a freedom from lenses inthe future.
The figures I was given for corneal transplants are that roughly 50% of people still need contacts post-transplant, and anothr 40% can get by with glasses (though may prefer contacts....) and only about 10% see well enough to dispense with either.
Intacs, and CXL unless done so early one won't really know if the condition was ever going to develop enough to make it worthwhile - well, they make it easier to fit eye correction - contacts, typical, though sometimes they may prolong ability to use glasses.
And they can go wrong too...... in several different ways, as I know all too well!
Incidentally, if you though the professionals are oh so keen on providing you with their services, just wait till you've met one of them champing at the proverbial bit (!) to get to fitting someone with the first lens post-transplant. Been there, done that..... it was the one I was desperately wanting to take out while on a horse recently.
All of above, I admit may sound very logical and sensible..... but dos nothing to stop the frustration, itching, soreness and redness ..... nor how to find the soap ever again if one drops it in the shower.
Rosemary

pepepepe, I sympathise, it's a love-hate relationship, can't live without them but could scream when it's a bad lens day, and then feeling utterly disabled when it has to come out because of the sheer opposite ends of the eye chart difference in vision.
I get stress relief by shouting abuse at my lens when it's causing me pain and bite anyone who asks me why don't I wear glasses!

Yes, I have exactly the same response, "So why can't you just wear glasses?" - **BITE**

I always make sure I do 'safer biting' and enquire as to whether they are up to date with their tetanus vaccinations [and rabies]. Then I score myself according to bite marks, drawn blood....

Good to know your thoughts on this one, so thanks very much for them.

I do beleive that there are options no matter how much it seems there ain't any, there are as many options as there are Dr's out there, if someone really does want to get there uncorrected vision back I'm sure there is a way in this big wide world - well thats what I think.

By the way my name ain't Pepepepe (thats would be silly), its Pepe, I was in a rush to join and needed a user name long enough and unique enough to join up !

Pepe

Pepe

Thank you for the formal introduction, and all the best.

Andrew