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General forum for the UK Keratoconus and self-help group members.

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Lesley Foster
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Joined: Wed 18 May 2005 10:23 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: Southam, Warwickshire via Milborne Port, Somerset.

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Postby Lesley Foster » Wed 18 May 2005 11:26 pm

Hi. Although I have visited this site on and off for the last couple of years I have only just decided to join in with all you lovely fellow KCers. I have been diagnosed since 1981, it would have been sooner but I was already wearing contact lenses. I have corneal lenses and manage reasonably well with them although the left one does tend to pop out rather more often these days. I have recently been fitted with scleral lenses in both eyes and although I am getting used to them I hope that in time it won't take forever to put them in! My only regret is that I have had to give up driving which is a drag.
Live long and Prosper.

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jayuk
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Postby jayuk » Thu 19 May 2005 12:59 am

Hi Lesley!

1981 hey! Gosh youve had it for a while!....

You mentioned you had to give up driving..was/is that because of the vision going above the legal limit or was that a concious decision based on you being uncomfortable driving?

I nearly had to make that decision about a year ago...and the thought of that scared me as my work involved me dtiving around 2000 miles a month!..Luckily, the vision in my left eye was corrected to the legal limit and my other in progress!


So from your experience...as an elder KCer (and I mean that in the most respectful way) what is your opinion on how KC knowledge and solutions have changed over the years?....I would suspect that you must have some really frustratng times back then where knowledge within the Optical fraternity was not as great as now?

J
KC is about facing the challenges it creates rather than accepting the problems it generates -
(C) Copyright 2005 KP

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Susan Mason
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Keratoconus: Yes, I have KC
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Location: Bolton Lancashire

Postby Susan Mason » Thu 19 May 2005 8:49 am

Hello Lesley

How long have you had your sclerals?

I took what felt like ages to get used to them and while for the first 12 months they allowed me to drive again, I too have now given up, mainly because I don't feel confident in my vision anymore and am very aware that it varies throughout my lens wearing time.

At the hospital usually when I am tested they suggest I should be ok however, then as they must they go on to remind me it is my responsibility to check if I can see the required distance. I seem to find looking at the eyechart light box easier than reading a number plate in daylight and for a while became quite obsessed with reading all number plates that I came into contact with. This did not help much as my husband has really good eyes and I found that it just stressed me out realising just how much I was actually missing seeing (my little boy did similar, however was less annoying with it).
I also went round the garages and had the distance stepped out so I could check, the funny thing is somedays are better than others however, this does not help much, especially when you are aware it varies throuout the day.

Anyway the car is sat on the path now and looking for a new home, I have sent off the form to DVLA to declare the eyecondition and am still waiting for a reply.

Do you get bubbles? Or have any funny stories? Don't be worried about asking any questions, some of us with sclerals have been in some very funny positions to try to get them in ok.

Even now after just 2 years with them I can still have problems and bad days.

best wishes

Susan

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Lesley Foster
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Posts: 485
Joined: Wed 18 May 2005 10:23 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: Southam, Warwickshire via Milborne Port, Somerset.

Postby Lesley Foster » Thu 19 May 2005 10:40 am

Hi, again. Yes I am an ancient KCer. My original optician was very good once I had been diagnosed but it got to the stage where he could do no more so referred me to another branch to see what they could do, that optician's reaction was "Oh my God you need a lens transplant like yesterday!" as you can imagine I was somewhat upset, however I was sent to see a specialist at the Bristol eye hospital who said that I didn't need a transplant as lenses could help. Once I had been to Bristol for a couple of years I was transferred to Roger Buckley who has been wonderful. He referred me to Ken Pullum for a scleral lens in 1990. I had to have a mould taken of my left eye, not a pleasant experience, but I found the lens uncomfortable and would just use it if I went swimming or anything where I could lose the smaller lenses. My new sclerals are RGPs and feel more comfortable and yes I do get bubbles which are frustrating.
My driving really does depend on how my eyes are behaving each day, I am going to try again with the bigger lenses as I won't have the worry of them falling out. As for number plates well I may not read them clearly but I can see the cars which I feel is slightly more important!
One advantage of KC I take guides camping but I'm not the one who has to get up at night!
Live long and Prosper.

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Paul Morgan
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Joined: Sat 06 Nov 2004 3:11 pm
Keratoconus: Yes, I have KC
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Location: Yeovil, Somerset

Postby Paul Morgan » Thu 19 May 2005 10:47 am

Hi Lesley...not really joining in your thread as such...just amused to see you're Southam via Milborne Port bit.

I'm in Yeovil so I know Milborne Port well, and I know Southam, as my Sister lived there. She's moved into Leamington now. Lovely spot.

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Susan Mason
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Posts: 414
Joined: Sat 24 Jan 2004 11:27 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: Bolton Lancashire

Postby Susan Mason » Thu 19 May 2005 11:01 am

Lesley

You may well be aware of this and may have also seen other posts over the last month or so about DVLA however, I was not aware until quite recently that I needed to declare my KC to the DVLA.

This link may help

http://www.dvla.gov.uk/drivers/dmed1_files/group1.htm

I think on a previous post it alsos comments on what the required sight distance is and I expct that as most of us are at the hospital or contact lens clinic quite frequently we are all well aware of what we need to see.

I have to admit that having not driven for 9 months or so now I was quite surprissed when I did check my own vision re legal distance as to just how much it had progressed.

Susan

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Lesley Foster
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Posts: 485
Joined: Wed 18 May 2005 10:23 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: Southam, Warwickshire via Milborne Port, Somerset.

Postby Lesley Foster » Thu 19 May 2005 11:51 am

Hi Paul, it's a small world as the song goes.

Hi Susan, Although I hadn't realised that KC was notifiable to the DVLA I did inform them as soon as I was diagnosed. I have never had any queries from them apart from having to read a number plate when I needed a replacement licence. I don't knpw about you but my vision changes quite frequently during the day. I have a wonderful assortment of hats and I always wear sunglasses.
( they also help catch the corneal lens when they filck out.)
Advantages of KC no.2 You can't see the cobwebs, if comments are made I tell people I am economising on Christms decorations!
Live long and Prosper.

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GarethB
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Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
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Postby GarethB » Thu 19 May 2005 12:33 pm

Lesley,

Welcome, I use the same ecuse as you regarding cobwebs, then my daughter comes and ruins thewhole illusion I am trying to create!

Oh and Southam, the home of the Broadspeed Bullit Ford Capris! Often frequent the pubs there :D

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Susan Mason
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Posts: 414
Joined: Sat 24 Jan 2004 11:27 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: Bolton Lancashire

Postby Susan Mason » Thu 19 May 2005 1:18 pm

Hi Lesley

Yes I too have a selection of hats and some nice dark sunglasses (although no need to catch the scleral).

And as for the cobwebs yes been there too and how the men can fib (well in my life anyway). Yes, mum it is clean etc and then you get your lenses in and what a shock!

Susan

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Lesley Foster
Forum Stalwart
Forum Stalwart
Posts: 485
Joined: Wed 18 May 2005 10:23 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: Southam, Warwickshire via Milborne Port, Somerset.

Postby Lesley Foster » Thu 19 May 2005 5:15 pm

Susan, I can't see the cobwebs with my lenses in, well that's my excuse anyway! Trouble is hubby notices them and insists on clearing them away so bang go the decorations again!
Live long and Prosper.


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