which KC symptom that affects you the most?

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rosemary johnson
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Re: which KC symptom that affects you the most?

Postby rosemary johnson » Tue 27 May 2008 5:34 pm

Melissa said that 100 years ago.....
Actually, 100 years ago, you just might have got lucky!
Contact lenses were, or so I heard, invented in the 1880s specifically because of people with KC. Or, for people with KC.
In those days, they were all what we'd now call sclerals - which is fine if you're one of those of us who like sclerals and get on with them fine.
They were also made of glass - not so good, as glass lenses were heavy, non-breathable, and had wearing times far less than can be achieved with modern gas-permeable materials.
But better than, say, 150 years ago!
I actually met someone who wore glass contact lenses - at an early KC group meeting at Moorfields. No, he didn't have the glass lenses in at the time! - but he told us all about how he'd been wearing them in his slightly younger days.
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Andrew MacLean
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Re: which KC symptom that affects you the most?

Postby Andrew MacLean » Wed 28 May 2008 6:34 am

I spent my adolescence in a town called Milngavie. My next door neighbour had been a long term wearer of scleral lenses, and had also begun with the glass ones. He attended the same contact lens clinic that I would start attending!

He spoke with great fondness of his original glass lenses. Of course, by the time I knew him he was wearing lenses made of more modern materials, but he could remember what an enormous improvement he had seen immediately he began to wear his lenses. At first he had not been able to wear a lens for more than a couple of hours at a time, but by wearing them one at a time he had adjusted to a good working day with a full social life in the evening.

He never managed to put his lenses in completely blind. First thing in the morning he would put in his first lens through the open lens holder of a large pair of specs with only one actual lens in place. After that he would use the already lensed eye to insert the next lens and then remove the one he had been wearing for the last couple of hours.

Andrew
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rosemary johnson
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Re: which KC symptom that affects you the most?

Postby rosemary johnson » Wed 28 May 2008 5:23 pm

Back in the days of glass lenses, something else that didn't exist was a vast range of purpose-made contact lens solutions.
People used to get their lenses out of the box, give them a good lick and pop them in.
I think modern optometrists would have fits if anyone suggested that these days - it would be worse than cleaning my lenses in Fairy Liquid!
... even if, od course, far cheaper than the sums we spend on solutions nowadays.
Presumably, glass contact lens wearers who switched their lenses over during the day had to restrain themselves from eating chili peppers..... raw onions, crystalised ginger........ or putting too much lemon in their Earl Grey or G&T.
Rosemary

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Andrew MacLean
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Re: which KC symptom that affects you the most?

Postby Andrew MacLean » Thu 29 May 2008 6:15 am

My neighbour made his own solution: cold water from a previously boiled kettle and salt. He did clean his lenses occasionally in a solution of previously boiled water from the kettle and washing-up stuff.

Maybe this contributed to his short wear time.

Andrew
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dweezil1968
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Re: which KC symptom that affects you the most?

Postby dweezil1968 » Thu 29 May 2008 11:09 am

the pain , the pain it gets me down, the randomness of it, the stabbing one, the dull ache, all of them. Wanting to rub your eyes. eye drops that offer no comfort. wanting to close eyes all the time, not being able to read drive or do anything really without a lens in. not being able to wear glasses. light sensitivity. red eyes.
but mostly the pain!

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Alison Fisher
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Re: which KC symptom that affects you the most?

Postby Alison Fisher » Fri 30 May 2008 7:37 pm

Photophobia is the worst thing for me.

The posts about people not understanding strikes a chord. A few weeks back we were at a family gathering. Most of the lighting at the house was via halogen bulbs (instant pain for me) so I hung out in the hallway where there was a tungsten bulb and kept my sunglasses on. 8) My sister-in-law asked me why I was wearing them in the house. When I told her the lighting hurt my eyes she said Can't you have an operation to sort that out? and walked away leaving me with my mouth hanging open.

Oh to be lucky enough to not understand the first thing about KC.
grafts in 1992 and 1996

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dweezil1968
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Re: which KC symptom that affects you the most?

Postby dweezil1968 » Mon 02 Jun 2008 8:20 am

its because its not as obvious as say a physical deformity and our eyes in general- look normal. So we look dramatic wearing sunglasses indoors or sitting in the dark, as I often do. since the graft op i get the question- so can you see now? ER, no, i can't, and i still don't know whether i will be able to- with lens or glasses...etc etc.
today my grafted eye has developed a nice stye in the corner, so i have put the extra drops in and am sitting working from home where I can sit in the dark and not disrupt my colleagues. got to call the boss now and explain, which always makes me feel like i am skiving- as i am not ILL, as such.

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rosemary johnson
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Re: which KC symptom that affects you the most?

Postby rosemary johnson » Mon 02 Jun 2008 6:17 pm

That irritates me too!
- I get people saying to me, starting about 3 days after the graft op "But can you see any better now?"
Errrr..... no. But then, I wasn't expecting to for several months. Hallo-o? It's a transplant. It takes a while to settle down, and then I have to get contacts for it anyway.
What is the most irritating of all is those who ask how the op went, and I say "Pear-shaped!" and tell them I'm still ahving hallucinations and all that stuff.... and they appear to listen to all that..... and they say "But can you see any better?" - as if an extra line or two on a Snellen chart would be worth ending up in Broadmoor for strangling one's surgeon under the influence!
At least, I have had mercifully few of those who say "Ewwwww, corneal transplant! I could never donate my corneas...."
Rosemary

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Alison Fisher
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Re: which KC symptom that affects you the most?

Postby Alison Fisher » Tue 03 Jun 2008 3:17 pm

rosemary johnson wrote:At least, I have had mercifully few of those who say "Ewwwww, corneal transplant! I could never donate my corneas...."


I must have had your share then as over the years I have had loads. Along with 'I could never have that done' type comments too. Yeah, right, like I had much of a choice back then if I wanted any chance of having useful vision again.
grafts in 1992 and 1996

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rosemary johnson
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Re: which KC symptom that affects you the most?

Postby rosemary johnson » Tue 03 Jun 2008 7:00 pm

Ah, sorry to land you with my share of THOSE, ALison. Mind, it is only 18 weeks today now since my (first) graft, so maybe mine are still to come.
Rosemary


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