Keractometer readings

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Sajeev
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Postby Sajeev » Wed 18 Oct 2006 12:27 pm

Ali, because KC is that corneal thinning disoder wouldn't it be good to do corneal thinkness readings every so often to see where your cornea is at?

Anyway, I read one laser treatment site which said that at the intial screening for laser treatment (which topos are done) they ask you to remove your hard lenses for a month, some sites saying more and some saying less, and also some quoting the length of time in line with how long you have been a wearer of hard contact lenses. For soft lens its much less.

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Steven Williams
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Postby Steven Williams » Thu 19 Oct 2006 11:28 am

Perhaps if effective monitoring of existing KC patients was done we would now know what causes KC and how to treat and manage the condition?

As someone with a scientific/analytical brain I just dont accept that such conditions happen at random and that nothing can be done other than to sit back and allow the condition to progress.

In the 23 years I have been a KC patient sadly there appears to have been little progress, particularly in managing the stage from diagnosis to corneal graft. I am hardly surprised based on my own personal experience how the UK health system fails to manage or give so little professional duty of care to it.

The setting up of self help websites like this one and local self help groups is the only positive development I have seen and at last it gives us a voice to be heard as opposed to being ignored as an individual.

The NKCF in USA seems to be the most advanced and best resourced global self help group at present and their quarterly bulletins are excellent reading and very informative (maybe a website link would be a good idea). Contact details:-

http://www.nkcf.org
e mail: nkcf@csmc.edu
Editor: Cathy Warren

The National Keratoconus Foundation,
Cedars-Sinai Medical Center,
8733 Beverly Blvd,
Suite 201,
Los Angeles,
CA 90048

Tel: (800)521-2524

Has anyone looked in the alternative health treatment of KC? i.e diet and homeopathic remedies. Is KC caused by a mineral deficiency, eg. potassium?

This is an avenue I am going to do some personal research into, especially having given my father information which he claims has saved him from dieing from Cancer. Apricot kernels:- B17!

Read "Cancer why we're still dying to know the truth" by Philip Day to understand how medicine is controlled by corporate business and the pharmaceutical industry.

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GarethB
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Postby GarethB » Thu 19 Oct 2006 3:10 pm

The B17 I heard from someone in Scotland regarding cancer and claims he discoverd it!

What research are you into?

Diet came up at the AGM this year and it is one of those nightmare things to research. How many times have we seen one food stuff being reported as beng good for you, just for a few months later another reporting stating how bad it is for you.

The guest speaker at the AGM discussed some of the genetic studies he has been doing and the work done by others which suggests that KC is the result of several genes coming together, but thne this is still inconclusive. This is because twins studdied that agre genetically identical both developed KC, but the progression was different!

Research is going on into the cause, the C3R is not a cure but in nearly all cases has regressed or halted KC. With 2 - 5 years post treatment data on a relativly small number of KC patiens the signs are promissing.
Gareth

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michaell
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Postby michaell » Thu 19 Oct 2006 4:08 pm

Hi Steven,
Me again, afraid, this is difficult, the computers are still to a large extent unable in some cases to capture the eye: incredible given that we can put probes into outer space so why we can't develop computers to fully photograph the cornea, I don't know? Anyway!
So the responses you are getting are not always disingenuous. Hence, the real difficulty of fitting a contact lens for KC.
I reckon there is a permanent non-surgical cure to keratoconus and I mean to find it!

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Sajeev
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Postby Sajeev » Thu 19 Oct 2006 5:40 pm

Gareth where do you get your stats from?
...the data is 6 years old and the crosslinking treatment is being done in alot of countrys, including here as the data is enough for those Dr's who have studied it. And like i said before and i correct you again, no one said it was a cure, ...only very very holy, saintly people can "cure"!! :lol:

jayboi2005
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Postby jayboi2005 » Thu 19 Oct 2006 6:06 pm

What is a K reading?
It is that light machine you look in to and then it creates what i call a weather map of your eye. I simply call it a weather map because it looks like a satellite image. All the different colours the Red being the steep areas. Is that a K Reading?

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GarethB
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Postby GarethB » Thu 19 Oct 2006 8:03 pm

One of the many readings generated by that map is a K reading.
Gareth

jayboi2005
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Postby jayboi2005 » Thu 19 Oct 2006 8:23 pm

Well if they are what i explained then i have one every 3 months when i go to the opticians.

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Andrew MacLean
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Postby Andrew MacLean » Sat 21 Oct 2006 5:11 pm

Actually Jayboi has articulated the position exactly as I understand it. I always had a K reading taken and the lenses I was given were prescribed on the basis of the best information from the objective readings taken and the best judgement of the optometrist I was seeing.

My lenses were always prescribed either direct by a hospital or a high street optician in a town where the hospital had no lens clinic.

I know that the experience of people in different centres does vary, but my answer to the first question is that, in my experience, lenses were always fitted on the basis of BOTH the measurement of my cones AND the considerable skill of professional people whose judgement I trusted.

Andrew
Andrew MacLean

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Steven Williams
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Postby Steven Williams » Sun 22 Oct 2006 3:59 pm

lenses were always fitted on the basis of BOTH the measurement of my cones AND the considerable skill of professional people whose judgement I trusted.


Thanx for that Andrew thats what I would have expected.

The optemetrists at MREH have been trying for over a year now on a trial and error to fit me with RGPs (never used K readings!) but to date I have not had a pair that remains sat on the cornea.


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