Quicktopic posts: Mar 2001

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

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elaine mayes -----dover

Postby elaine mayes -----dover » Sat 03 Mar 2001 8:00 am

i'm 44-had KC since 9yrs old. each eye grafted and now wear sclerals but i'm limited to how long my eyes will tolerate them. I'm having trouble at the moment so am due to see good old Ken at Moorfields on monday 12th.march. I'm expecting to be there for at least 7hrs and was wondering if anyone is likely to be there on the same day?days like these can be trying as we all know and it would be brilliant if there was someone to have a laugh with.like freddy i am new to this site and look forward to hearing from other users.


Postby Whiteduck » Sat 03 Mar 2001 8:34 am

Hello all,

I have had KC for about 12 years now since the age of 18/19.

Does anyone know about the following:

Piggybacking RGP on soft.
SAM coated RGPs
Night-time driving vision improvement

Look forward to seeing you at the Conference in two weeks time ?

I have put together some useful links on http://www.bradleyduck.com - do let me know if you know of others and I'll add them ASAP.

Take care of those eyes.

Kind regards

Sejal Bajaria

Postby Sejal Bajaria » Sat 10 Mar 2001 5:01 pm

Name: Sejal Bajaria (Homepage)
Country: United Kingdom Date: Wed Mar 7 02:10:15 2001
Comment: I am nineteen, and I have had the condition since the age of 16. It is deteriorating rapidly and I find that it upsets me on a regular basis but I have learnt to cope.

My University course becaomes difficult to study as the usage of computers is significant to the course.

Sue Ingram

Postby Sue Ingram » Sun 11 Mar 2001 7:48 am

Dear Ian/Whiteduck

I have been piggy-backing RGP and Scleral lenses with soft lenses. I also have scleral lenses which are coated which helps about 99% with the mucous problem, however, I don't know what they are coated with. Ken Pullum from Moorfields has been researching all of the above in order to help me and hopefully other KC sufferers in the future with their vision. We will be talking about our experiences from the optometrist's point of view and the personal point of view at the KC Group Conference on 17 March so hopefully you will be able to find out more about this then and ask Ken any questions you need to on the technical side. See you there.

Kristian Tizzard

Postby Kristian Tizzard » Sun 11 Mar 2001 10:13 am

Can anyone tell me the venue for the KC group conference on 17th of march? I would quite like to attend.

Sue Ingram

Postby Sue Ingram » Sun 11 Mar 2001 1:54 pm

Dear Kristian Tizzard, the KC Group Conference is in London on 17 March - you can find details on the KC website http://www.kerataconus-group.org.uk. However, I believe all the places have been taken. You can ring Mike Oliver if you would like your name put on the waiting list in case of cancellations - his tel no is on the website.


Postby Whiteduck » Sun 11 Mar 2001 6:31 pm

Dear Sue,

Thanks very much. I will be there on Saturday and look forward to meeting everyone.

Ken has tried Sclerals previously.

Do you have any experience of SAM (Spherical Aberration Management) - as in http://www.clpl.co.uk ?

How did you get on with piggybacking - did it improve comfort/vision ?

Best regards


Postby whiteduck » Mon 12 Mar 2001 2:31 pm

Agenda for Saturday ?

Anyone know the agenda as I have received directions but I do not know how the day is organised.

Many thanks

Sue Ingram

Postby Sue Ingram » Mon 12 Mar 2001 5:00 pm

Dear Whiteduck - I have not heard of SAM lenses before, however, having visited the website, they sound wonderful; do you wear them? Can KC sufferers benefit from them?

I am getting on pretty well with piggy-backing; comfort-wise it is excellent - I could pretty much go on wearing the lenses permanently without taking them out (at least that's what if feels like!), however, I think this probably means that I do overwear them as I do not realise that they are in most of the time. I do find it is a bit of a faff wearing three sets of lenses at the same time! I wear soft disposables in both eyes and then an rgp corneal lens in one eye and a coated scleral in the other - this appears to be the best vision that I get. However, I do find that I cannot do the piggy-backing on a continual basis - I mix and match with all my lenses, organising it so that when I need the best vision and best comfort, I wear the piggy-back lenses.

With regard to the agenda for Sat, I am not sure what the final agenda is, however, I believe that the optometrists, surgeons etc will be talking in the morning, with KC sufferers relating their experiences and how they manage the condition in the afternoon, together with some general stuff to do with the KC Group as a whole and how we can help support each other. Look forward to seeing you there.


Postby Whiteduck » Tue 13 Mar 2001 2:25 pm


I don't currently wear SAM lenses but I am hoping to give them a try soon.

On http://www.clpl.co.uk they also have software that you can download which allows your "eye doctor" to enter the parameters of your cornea and do trial fittings without all the tears - cool!!

If you wish to email me directly then my email address is ian@Z-SPAM-Zduckland.f9.co.uk (remove Z-SPAM-Z from this address for it to work).

Best regards

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