Quicktopic posts: Jun 2003

[Payne Family]

We have been through a similar experience. My daughter has had KC since she was 4 and is 12 now - she managed with glasses until about 18 months ago.
We were told the next option was soft lenses which were brill except that she couldn't see out of them !

The only option then was hard lenses and we tried many, many types - we have a brilliant optician in Yorkshire who has a special interest as his nephew has KC. We must have gone back every week (at least) for months and all the lenses were on sale or return even though some of then were specially made for Katherine (we never had to lay out any money at all). After about 9 months in sheer frustration at not being able to find the best vision he tried glasses again and to our disbelief he managed to get her vision with new glasses to the best it has been since she was diagnosed ! Our optician was so elated that he let Katherine have designer frames at the normal NHS price.

Apparently her eyes had been going through change (she has quite advanced KC in her right eye and her left eye has now started to show early signs of KC.
Because of Katherine's age both her optician and I are determined that we will try every option before we consider a transplant.

Hope this helps someone.

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[Emma Fletcher]

Hi Everyone

Sorry I haven't posted at all for so long but I have been doing my dissertation and exams which I'm happy to say will all be over by tomorrow.

I just have a quick question regarding Saline. Until I was told a month ago that you should never wash you lenses/lens case using any tap water I had been doing so (i had never ben told by my optician). Anyway since then I have been using saline as I have been told to do, but I was wondering how much of it everyone gets through esch week. I am using one of the big bottles each week. Is this how much everyone else uses or am I using too much?

Thanks, hope everyone's well

Emmax

[Rob Armstrong]

Hi Emma.
I've always been told to rinse my case under the hot tap and leave it to air dry. Anyway, as for the saline, I used to go through a 300ml squirty bottle in 4-5 days. My opticians always joked about the amount I was using and asked what I was doing with it, so I guess that is a lot. I started getting the bigger 500ml bottles, and they lasted about a week. I've been down to one lens for about a year now, but the amount I use hasn't halved, I just clean it even more thoroughly. Rather use too much than too little and suffer the consequences!

[Vicky Griffiths]

Can anyone tell me how I can unsubscribe? My son was diagnosed with KC this time last year (he is now 12), and I thought I wuld find it useful and helpful--perhaps even reassuring. In fact, I can't bear to read any more messages, I find it so distressing thinking about what will happen to him. Thought there may be a positive side...there isn't.

[aimee.wilkes@bt.com]

Vicky,

you are right there aren't many positive sides to having KC but I find this web site a god send, I hate the unexpected so at least I can fully prepare myself for what may happen and what to do in certain circumstances. I have been told just two days ago that I also have KC at the back of my eye and nothing can be done about it, this is something I did not expect, had I known about it before then it wouldn't have come as such a shock. I realise that it is not the nicest of things to read about but at least we are not fully in the dark and we can support each other as we can understand what each other is feeling. I'm sorry that you want to unsubscribe, I hope that your son copes with KC in the future as best he can.

All the best

Aimee

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[Hlooby@aol.com]

To Aimee and Maria Gabriella,
I have had my RGP lenses since the end of January. I thought the same things as you, I didn't seem to be getting anywhere with them and I just kept getting strange vision. But all of a sudden they just seemed to settle down without me realising. I hated them at first, I hated the way they used to slip out of position and I'd be suddenly in my little blurred world again. But believe me please, persevere and it will all work out in the end. Look after your lenses too and love the act that you have them, because me being silly lost one of mine!! I was heartbroken!! So please keep trying. If you want to email me or anything please do. Hlooby@aol.com. Luv Laura H

[abdi]

hi everyone i have just discoverd yesterday that i got keratoconus and I,m very afraid what will happen in future

[Laura]

To abdi
Don't be at all frightened for the future. Just because you're diagnosed with Keratoconus does't mean youre going to go blind. There are millions of people on this web site that are living everday lives happily suffering from early sighs of KC to severe cases where some people have had operations. Never be afraid to ask for help or advice from doctors etc, it's their job to help you. If you've only just been told that you have KC then I imagine your KC is still like mine, not that bad, although it may feel like the end of the world at the moment, things do look up. Read back on the previous pages of this website. I assure you there is light at the end of the tunnel.

To amiee etc
RGPs yes they are horrible. Ive had mine now since the beginning of february and i do get a mixture still of blurred and normal vision hen i sometimes blink and they fall out of focus! Im so paranoid that they are going to fall out that i keep a pocket mirror with me everywhere and check every ten mins or so that thay havent moved at all. But like doctors and specialist say keep going with them, at least you have the option of having them some people i have met dont. Oh and dont loose them you may have to pay a great some of money to replace them, i had to about a month ago nearly 200 pounds and thats with the help of the NHs!! Laura.x.x.

[Maria Gabriella]

Thank you every body for your replyes.
Gillian, I do actually have an NHS optician and I asked the ladys at the reception whether he is experienced with Keratoconus and they said that he had lots of patients with the condition.
I know that I shouldn't moan too much since I'm only suffering with one eye although the other eye is also slightly affected.
My optician asked me to pay the lens after a few weeks. But what if I'm not happy with it? Would I get the money back?
Gabriella

[Jane]

Having had KC for about 3 years now, I've since been diagnosed with hydrops, which apparently can occur in advanced cases such as mine.
I've been told it will take some time to heal, about 8-10 weeks which may or may not result in some scarring. If scarring appears, a corneal graft will be necessary.
I just wish my optician had warned me that this may happen as I had never heard of hydrops before and now I'm petrified of having an operation, although I need to discuss this with my eye specialist who will check on my condition in 4 weeks time.
Has anyone else had hydrops and have they had a corneal graft?