Quicktopic posts: Mar 2003

[Paul Bines]

An update on my condition - sorry I don't post very much but I do find the posts other make interesting!

I was diagnosed some 12 years ago, and, afrer unsuccessful attempts to wear contacts (and after being told that I couldn't wear Sclerals (they were being 'trialled' at the time - it's only through reading posts here that I realise what they were called!) due to my eyelids being too narrow!), I had a graft on my left eye, at Moorfields (Mr Buckley) about 7-8 years ago. All was well in that eye until last year, although the right eye was deteriorating. Somehow, I dropped out of regular appointments at Moorfields.
Last year I suffered a rapid loss of vision quality in my left eye, and was diagnosed with corneal ulcers - in the meantime, I had been put in the waiting list for a graft on the right eye, which happened last October - so far so good.
Now, I'm on the list for the left eye regraft - and am participating in a trial for matched grafts which may reduce the chances of rejection, and may possibly reduce the amount of time I have to wait for the graft - this is at Southend Hospital, with Mr Kasaby.
I work in IT, and as a result have a lot of screen work - so far no problems (well, the ulcers last year meant I was off work for around 6 weeks, but my employers were most understanding, and it helps that I have a 19" monitor - the left can't see anything but the right more than makes up for it!) All I'll say is, if anyone is reading this list ahs is neglecting visits to Opthalmologist, or is having second thoughts about grafts, do it! It IS worth it.
Au Res.,
Paul

[Dhiren]

Hi just wanted to say thank you thank you thank you so much! WOW Iv had a great response and its only been one day!
Its times like these that make me think im glad i have KC because it means im part of an intelligent, fantastic group of people who are willing to help fellow KCer's!

Remember to also complete the KC groups survey, its a great survey, dont miss out. The results will be very interesting!

Thanks again, Dhiren!
P.s Anyone who would like to take part in my survey("quality of life in KC patients compared to CL wearers" email me d_nakrani@hotmail.com

[Sue Ingram]

Hi Rosemay (1478), Hmmm, that is a very good question regarding the glasses with sclerals. I am not sure exactly how it works but it is not to do with the power of the lenses as such but something to do with cylinders which I think can be adjusted for glasses but not for the lenses - it brings all the letters on the chart back together so that you see one of each rather than many of each. You will have to ask Ken to explain the technicalities!

I will be at the KC Conference on 14 June so hope to see you and anyone else who is going who we have had dialogue with on this discussion page and not yet met. The first conference two years' ago was extremely beneficial so I would definitely recommend going, especially if you are a student as this year the main theme is how people cope with KC at school, college and work.

Take care. SUE

[Shirley]

I was interested recently to read recent postings about scleral lenses and in particular your replies Sue (Ingram). I had been wearing corneal lenses for about 20 years when my left eye (my good one)decided enough was enough!Strangely the soreness and pain used to come about 24 -36 hours after wearing them but was so bad I couldnt use that eye at all. For about 2 years Moorfields tried different corneal lenses - each one as bad as the last and then I happened to meet Ken Pullum who immediately fitted me with scleral lenses. I can't believe how comfortable these are (I have the mini ones)and my vision is as good if not better than with the corneal lenses. My problem is however "air bubbles" which build up sometimes after only a couple of hours. I have tried putting a couple of drops of celluvisc in the lens before adding the ami-dose with limited success. Has anyone any suggestions?

[Laura]

Hi you guys!
I have had my rgp lenses for just over a week. I have good days and bad! But, all in all I think I'm doing well. I've been wearing them a bit more each day and I've got up to 8 or 9 hours. There's a couple of mornings when I haven't been able to put them in but I'm persevering. I'm not getting them stuck where they shouldn't be as often! Anyway thought I would let you know that I am coping, I had to tell someone because my friends and parents don't really understand. Thank you!

[Andrew MacLean]

Hi Laura

Well done. It took me ages to get into the way of putting in my RGP lenses. some days they just wouldn't go, and other times they seemed to enjoy a little tour of every part of my eye except the cornea!

Twenty years or so later I'm pretty blaz&#E9; about it all!

Best wishes

Andrew

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>From: QT - Laura <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>To: a.maclean@dial.pipex.com
>Subject: Keratoconus
>Date: Mon, Mar 17, 2003, 4:08 pm
>

< replied-to message removed by QT >

[sarah marsh]

hiya
just read some posting and wondered where the K C meeting is , i would like to go.
can u let me know where and when it is please either on the web site or email me on starlight7723366@aol.com.
thank you !
sarah

[Sue Ingram]

Hi Sarah, the 2nd KC Conference is being held on Saturday 14 June, 11.00 am to 4.00 pm, at the Charity Centre, Directory for Social Change, 24 Stephenson Way, London, NW1 2DP.

Places do need to be booked as numbers are limited. I am assuming that you can request booking forms from the Group's email address info@keratoconus-group.org.uk. If this is incorrect, perhaps someone can correct me. SUE

[Sue Ingram]

Hi Laura (1486), I would also like to give you a pat on the back for perservering with your new lenses. Well done! It does take some time but you will get there in the end. Usually the motivation is the fact that your vision is better with the lenses than without. We have all been there and know exactly what you are going through - you'll soon be able to put them in and out 'in the blink of an eyelid!' Keep up the good work. SUE

[Andrew Bosanquet]

Thanks for your welcomes and comeback on sclerals. Glad to hear so many of you are doing well on them.
Shirley said 'I have the mini [sclerals]'. How big are they compared with the 'standard' ones?
Forty years ago I could only wear sclerals for 4-5 hours max. How long are you all wearing them now?
Andrew