On the news today they said there was a cure for KC

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Andrew MacLean
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Postby Andrew MacLean » Sun 16 Apr 2006 4:54 pm

Spot on asylumxl! neatly put!

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Lynn White
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Postby Lynn White » Sun 16 Apr 2006 5:06 pm

Well yes asylum, that is a major point as well... though its not impossible to develop a "cure" that relieves the effects of a condition without fully understanding WHY it occurs.

For example, deaths from heart attacks can be reduced by many medications while the experts still slug it out as to the definitive causes.

You can "cure" a headache with a painkliller without knowing why it occurred and so on.

:lol:

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jayuk
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Postby jayuk » Sun 16 Apr 2006 5:19 pm

Hmm do we "cure" a headache with a painkiller?..or do we provide a temporary relief to the effects of the headache which exhibit its affects via the central nervous system?.......ooooh the contradictions that occur when we talk about cures and reliefs!.....why cant everything be simple lol
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Postby Lynn White » Sun 16 Apr 2006 5:31 pm

Hehe...

yes I know Jay. That is sort of the point I was trying to get at.

You see, even if C3R stopped KC progressing and gave back stable vision, the original cause of KC would still be there and if genetic could still be passed on ... hence me saying that CURE is a HUGE word!

Other examples: a hole in the heart can be "cured" by mechanical repair BUT if its a genetic defect it can still be passed on.

Therefore a CURE as such is virtually impossible to even to begin to hope for yet.

Control and perhaps reducing progression is another matter.

Lynn

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Postby jayuk » Sun 16 Apr 2006 5:33 pm

I think we should just heal the world and make it a better place!..for you and for me and the entire human race!! :-)
KC is about facing the challenges it creates rather than accepting the problems it generates -

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GarethB
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Postby GarethB » Sun 16 Apr 2006 7:08 pm

My wife and I have just left the cause of a headache and the symptoms are already going away.

The inlaws are still next door and we are enjoying some piece and quiet :D
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Carole Rutherford
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Postby Carole Rutherford » Sun 16 Apr 2006 7:26 pm

We often have this kind of discussion on the ASD forum. If there were a pill to cure autism would you give it to your kids? Very emotive. Personally yes I would because although I love my two sons warts and all I also know how difficult their dailys lives are because of their autism - so if that could be taken away from them then I would be all for it.

However autism like KC is still pretty much a mystery which they are unable to solve. So how can you cure something when you have no idea what ia causing it in the first place? I believe that in my case it is genetic and is probably allergy induced,which also leads to the KC where David is concerned, as we have been told that KC and multiple allergies go hand in hand.

I have never been a parent who seeks the cure pill because I do not believe that you can cure autism. So would I look at this so called 'cure' for David and his KC - the question is not mine to answer as David is now 18 years old and that make him an adult. So this may or may not be something which he will have to consider. However if it were down to me then yes I probably would because added to his autism then it is making his life doubly difficult. It may well not cure the KC but if it were to stop it from progressing in his left eye as rapidly as it has spread in his right then I think it's worth looking into.

Hope I have not shocked to many people with that statement.

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Postby Andrew MacLean » Mon 17 Apr 2006 8:18 am

There is another complication. sometimes the 'cure' for one condition will actually kill the patient. so there would, undere these circumstances, be a choice: does the sufferer live with a crippling and disabling condition for another ten years, or does the sufferer shorten his or her life to five years free from their disease?
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Postby GarethB » Mon 17 Apr 2006 9:56 am

I remember what my Mum used to say when I took her to hospital for her cancer treatment; ' If the drugs don't kill me the cancer will, it's a case of deciding which path will give the best quality of life during the remaining period.'
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Postby Lynn White » Mon 17 Apr 2006 10:28 am

Carole...

My only point was to say C3R wasn't a "cure" in the general sense of how people think of cures.

As a treatment for slowing down progress and stabilising KC, it looks to be very promising and is certainly less invasive than other options.

As you quite rightly say, David has enough to contend with already and he may well think this is a good option to explore. It is certainly worth looking at and talking to people who have had it done.

Lynn


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