The truth shall set you free

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

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tommy.dean
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The truth shall set you free

Postby tommy.dean » Thu 21 Jun 2007 5:34 pm

http://www.kcfreedom.org/
yes some of the treatments talked about are not available on the nhs but this is something we as a group can change, and make thing better for future keracotonics, please for god's sakes open your eye's people i've been asking you for 10 months now maybe if you wont listen to me you'll listen to this website which has all the information on keracatonus you will ever need, anne & other moderators I'm sorry but your reasoning for censorship is holding this movement back, we need to educate not be scared of the nhs.
tom

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Steven Williams
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Postby Steven Williams » Fri 22 Jun 2007 11:48 am

Thanx for that Tom I'll check out that website in more detail tonight.

I for one certainly want to listen and learn after burying my head in the sand concerning KC from 1987-2001.

I am against any form of censorship and totally support article 19 of the United Nations
declaration of human rights.

Freedom of information and education, education, education............absolutely agree.

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tommy.dean
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Keratoconus: Yes, I have KC
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Postby tommy.dean » Tue 26 Jun 2007 10:32 pm

thanks Steven, maybe if all of the KC'ers were like you we'd be able too change things quicker, the collagen cross linking treatment needs to be implemented by the nhs now not in 5 - 10 years, what we all need to ask ourselves is the reasoning behind this treatment being held back, if keratoconus is the main reason for a corneal graft in the western world then a "cure" or treatment to eradicate the need for a corneal graft isn't going to be accepted quickly by surgeons who perform them also anybody saying it's due too testing needs too read up a bit more i've read studies showing 72 months follow ups using the ce approved iroc system isn't 6 years the amount of time treatments are needed to be tested for nhs use? maybe the problem is the "reputable nhs" hospitals developing there own versions, with the uv 40 light a lot closer to the eye, which has less predictable results? If things don't change more people will end up having unnecessary operations for keratoconus when better options are available(yes that might be hard to accept for some people but other keratoconics just developing the disease need to have it all explained fully, I've had a penetrating keratoplasty and yes it upsets me that my own cornea could have been saved!), all options should be discussed with keracotonics not just transplants and rigid gas contacts. I think that the KC group needs to get the information up to date on the website, a few scrappy topics isn't good enough keracotonics need the facts on all treatments.
Am i the only person on this site who thinks that c3r (collagen crosslinking) is a cure for our disease, and we've not been informed?

tom

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Jon House
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Postby Jon House » Wed 27 Jun 2007 1:40 pm

When I was first informed by my optician that she suspected I may be keratoconic I read a lot of articles on the www prior to my initial consultation at the opthalmology clinic. One of the articles I read was regarding R3 riboflavin drops, I think it may have been from a link on wikipedia, and I assume that it is the same as
C3R now being discussed.

When I raised this as a possible treatment with my consultant when he had confirmed my diagnosis, he said that it is an unproven
technique and as such was unlikely to be used in this country for the foreseable future.

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Hari Navarro
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C-3R

Postby Hari Navarro » Wed 27 Jun 2007 2:12 pm

Hi,
It always amazes me how much and how little certain doctors know about keratoconus and its emerging treatments.

In my case my first optician told me that nothing was wrong with my eyes and that I didn't even require glasses... the doctor I consulted shortly afterward referred me to Moorfields hospital with suspected keratoconus! My next doctor told me hard contacts 'cure' KC and the following informed me that corneal graft was a very suitable option (bearing in mind it had a 95% success rate, he considered it a cure!).

My point is that it is not good enough for our doctors to say things like 'It (C-3R) is an unproven
technique and as such was unlikely to be used in this country for the foreseable future' and leave it at that.

The passion should be evident in the fact that ANY alternative to the accepted methods has been developed. It should be your doctor that is a wealth of information on cross-linking, he should have researched it, attended conferences dedicated to it and read every last paper printed on it.
This is a keratoconus treatment and we go to our doctor to be treated for keratoconus.

Maybe KC is not the driving force in many clinics, fine... but there are those who profess to be expert in treating KC and it they especially that need to be fully informed.

I personally have no idea if C-3R is the treatment we have been waiting for, but then it not my job to know.

In my experience I have been told time and again that mini ARK is a contridiction to KC, but when pushed have been given no solid reason why... none I have spoken to have even bothered fully researching the procedure... content rather to refer to scattered accounts relating to RK (radial keratotomy) cases. But never once approaching mini ARK head on.

Im not saying lets get all 'giddy' about C-3R and instantly hail it as a cure all. I'm saying lets fast track the available data to those whose job it is to treat us and have the nuts and bolts of this thing thrashed out.

Even a week looking through keratoconic eyes can be an eternity to some... I dont think anyone of us has the luxury of the softly, softly lets not tread on any toes approuch.

Hari

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Marc Pritchard
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Postby Marc Pritchard » Wed 27 Jun 2007 4:44 pm

Whilst things like this could make a difference to our lives test still need to be made. This process will cause damage to corneas below a certain thickness and considering this is the main reason for our problem I should think it needs more research.

Your right to highlight the situation but wrong to champion something that you only have half the available informatoion for. UV light is very damaging and I for one would like to know how safe it is long before they use it and that requires more tests.

If something like this is what you're looking for go private, otherwise be thankful you have help that is free at point of use and not something you would have to fork out for.
Reality is that which, when you stop believing in it, doesn't go away.

Philip K. Dick

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Jon House
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Postby Jon House » Wed 27 Jun 2007 5:02 pm

How is corneal thickness measured?
Is this done as a matter of course with our condition, or is it only done when considering
C3R treatment?
Is this done when the topographic exam. is carried out?

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Hari Navarro
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Keratoconus: Yes, I have KC
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C-3R

Postby Hari Navarro » Wed 27 Jun 2007 5:19 pm

The question is 'How much research is enough research' and who or what is it that we use as a standard bearer for the treatment. There is no doubt that tests and trails are needed before a treatment is offered on a wide scale, but the arguement is that not enough is being done to ensure that these are carried out with as much careful haste as possible. Some of our doctors have not even heard of the procedure let alone decided if to endorce it or not.

My personal doctor had many concerns regarding cross-linking... he too was worried about the effect of UV radiation on the corneal surface. But he has taken much time to research the method and has decided to use it in certain instances. He has introduced additional eye drops and have sought to develop a way for the procedure to work in conjunction with the surgury he already uses. This is to say that he has taken an active interest in a procedure even though it at first presented him with concern.

He once told me that if a new technique in keratoconus treatment were to appear on the other side of the world tomorrow he'd be on the next plane, for him at least keratoconus research is an ongoing process.

Again how long is long enough... do we wait for another 5/ 10... 15 years of results? The standards that define this vary from country to country, I have read some of the reports prepared by the german developers of cross-linking... they seem all to be very respected learned professionals... they have deemed the time right to use C-3R... but US doctors believe that a goverment body should be the one to decide, is this a gun-shy reaction to possible law suits or the true researched feeling of the medical community as a whole?

Just watch the flood gates open when the FDA does get around to granting permission for C-3R, how many of those hesitant worried faces will appear smiling in online advertizments for the shiny new C-3R treatment for KC?

Hari

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Marc Pritchard
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Postby Marc Pritchard » Thu 28 Jun 2007 12:36 pm

Hari you raise good points.

The main reason for waiting is really to discover side effects and pick up on possible problems. Companies can run global trials and so we could get some really good data. But how long does it take for a side effect to start being noticable, 1 year, 2 years, 20 years.

I'm sure if those who were treated at an early stage were to have side effects their thoughts wouldn't be "oh well, never mind, maybe it was a bit early", and I have no doubt the same can be said for anyone on this site. Companies would face massive law suits and all for helping those who asked for the treatment early.

In the pharma industry most products go through an 8 year trial on those who are affected, I think that should be sufficient as long as we can get a thousand or so people to take part.
Reality is that which, when you stop believing in it, doesn't go away.



Philip K. Dick

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tommy.dean
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Posts: 111
Joined: Tue 10 Jan 2006 11:13 am
Keratoconus: Yes, I have KC
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Location: Blackburn
Contact:

Postby tommy.dean » Thu 28 Jun 2007 2:54 pm

finally some of you guy's are starting to talk about the real problems, which is what we need to do on this site if we want life to be easier for KC'ers in the uk in the future, c3r will take a long time to come into the nhs in the uk, one of the main reasons for this imo is £££££ in so many ways one being contact lens manufactures, if KC is halted at the earlier stages in the future then a lot less contacts will be fitted and therefore sold.
If you think about a corneal surgeon who perform transplants, they would get a lot less work if the main reason for transplants in the uk (being KC) was eradicated, i think this is why many of them are so arrogant with us. Considering there being paid by us and are there fore us the treatment of keratocnics who don't just "go with the flow" is terrible, i should not have had to spend the last 10 months travailing down to london (i live in the north west) for my treatment, the north seems to be very lacking when it comes to KC expertise and knowledge of treatments, it needs to change, we need to educate them.
tom


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