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

[Carole Rutherford]

I was not trying to upset anyone with my post so sorry

As someone who has allergies to just about everything going myself including all antibiotics, even though sometimes I am forced to take them, I would always think long and hard before I took anything and would apply this to my children. They take as little as possible where drugs are related.

However with David it is complicated because as someone with autism he is a very 'visual' person. People with autism don't usually do audio learning they are visual learners and need to see something to enable their understanding. Again I don't say this to upset anyone. The eyes are precious to all. He has so many sensory issues that I worry about the impact of him losing his sight and there with it every interest that he has in life. People with autism are very difficult to motivate and to keep afloat. Many suffer dreadfully with depression and other related mental illnesses. So far I have not even mentioned this to David because he has had a couple of very down days.

Carole

[Prue B]

Ok it was on 3 news programmes and the most amazing claims were made.
One show said KC was a comman eye disorder affecting 10000 Australians a year, The Age claimed it affected approximately 10000 Australians. It was claimed by most media KC caused blindness, some said could and others actully added in worse case scenarios.
The best report I saw was in todays Age, a reputable broad sheet, it said it came from Germany and they had 250 cases treated with 100 percent success with no long term affects. The Age also said it did not improve the vision but halted the progrees, hopefully meaning that a KC sufferer will not need to have a transplant. Half of all transplants in Australia are preformed on people with KC.
The best thing was it really put KC out there on the news and it gives some hope. I am glad it is being researched, maybe it will help my daughter, maybe it wont but the worst that can happen is it is a failure and as a result cause research to happen in another direction, the best is that maybe it will be a step toward a cure. My sisters renal guy says if they were told 40 years ago what they can do today they would have said it was pipe dreams, eye care would be similar.

[asylumxl]

my second 2p - i agree with jayuks signature lol

i think the first challenge with KC is learning to accept it and not wallowing on the problems it creates and concentrate on the positives.

surely KC has made your life that bit more interesting - surely it allowed you to meet new people and go to new places? i certainly think so, i get to meet new people and go new places, and since my life is so borrrrrringgggggg it really makes my life a bit more worth living lol.

[GarethB]

Many people with KC actually get out less so do not make new friends or have new experiences.

Criwds becomne daunting as you can not see through them, steps look like slopes and navigating your way round a place you once knew can be very hard so the person withdrwas to the safety of their own home.

At hospital everyone sits quietly waiting there turn.

As yet loal groups are not convenient for everyone, but I know more and more are being set up so oneday this may all change.

[DJ Smak]

This is one area where science kind of disappoints me. They can transplant hearts and reattatch limbs but we still suffer with these eye problems. I know they are working on it and have made some headway but how much longer till they find an absolutely succesful treatment. Obviously no one knows but it saddens me as im sure it does many of you. And even if they do find something deffinate, how many would be able to afford it? That saddens me as well because its not cosmetic or whatnot, this is people's lives and you shouldn;t put prices on that, or at least hefty ones. I was interested in the C3R, its rather expensive and i cant afford it, also my right eye is pretty far advanced so i probably couldn't get it done on that one.

I guess I'm having a woe is me moment, seeing as i plan to get married soon and i want to be able to see my fiance and my future kids if we have any.

[asylumxl]

well - when your a baby you can hardly see a few inches infront of your face, yet you still go on adventures, experimenting with your surroundings. i guess some people lose that feeling, but i like to believe i havent. i walk through streets at nice and all i can see is ghosts of the bright lights, but it doesnt make me any less up for it.

[Lynn White]

Carole... you didin't upset anyone ! I was just pointing out about the cure thing

DJ Smak.... heart transplants took a while to get going too. We take it for granted nowadays but it was a long hard struggle before they got it to the state it is now.

Research is ongoing and as I said, C3R IS very promising. However, one cannot definitively say it has no long term side effects as it has only been done for a few years.

Lynn

[Prue B]

Actually that was my point, no long term side effects needs longer than 5 years, because that is not long term. I found the most promising thing was that it got publicity, and lots of it. It is being spouted as a cheaper and better alternative to grafts, but if it is for early to mild KC then it will take a while to filter through. Maybe though in a few years time it will be used to stop the progression early people with KC see reasonably well with glasses. Thagt would be an improvement that would affect quality of life for future sufferers.

[Sweet]

Hehe interesting discussion here!

I liked the reference to analgesia. Yes the pain would obviously stop if you could find the cause and fix it. Or you could stop the pain by taking something to change the chemicals in the brain or ones which block the pain receptors from working. But the problem might still be there when they wear off!

Just as when we cope with KC we could just leave it and manage with limited sight or use lenses to try to cover it up and cope better, but obviously when we take our lenses out we still can't see! This is much the same way as most people deal with pain when taking painkillers, but all of these aren't cures just ways to cope with a problem until we find one!

Everything sadly takes time and to ensure that a new treatment works long term studies are needed. But just as heart transplants had to go through this long process new technology is being developed and trialled everyday! Just recently there was a patient abroad who had a bladder op which was grown with her own cells outside her body! Now to me that is dam amazing and definately something worth experimenting with as rejection rates would be zero!!

It's just a shame that we haven't quite got around to developing corneas in a petri dish yet!!!

Sweet X x X

[John Smith]

Not quite sure about the petri dish thing, but I'm sure that grown corneas (maybe on mice or pigs or something) using the patient's own tissue will be around before too long.

The next problem is working out how to stitch them in place smoothly so as to avoid post-graft astygmatism.