All of us Vs Keratoconus


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Post Info TOPIC: KC Parent


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Date: Wed Nov 14 9:29 PM, 2007
KC Parent
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Zeus

You are so kind and thoughtful.

In the world today alot of people are very materialistic and greedy. I have been brought up to work hard for what I have and that family is the most important thing you can ever have. I hope that one day a cure for KC will be found for my son and all the lovely people on this forum. I thankfully haven't got KC but for all of you it must be very scary. On bad days I look at my son and think why him? then I think ok we will try our best to support him in all he does and face the problems we have.

I feel so much more positive about the future now and will E mail Dr Jory. Like I explained you cannot put a price on health.

I wish you all the best

I will keep you updated

Kind Regards

Linda

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Date: Wed Nov 14 11:11 PM, 2007
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Hello linda again,

I think that with the collagen crosslinking your son would do fine.Its the best choice for now and the first choice that you should try.

People should know and hear from this forum that we need to help each other.I may sound romantic but that is the only way to feel good and relax your soul.All the material stuff are bull****s.When something like keratoconus hit your door you realize that nothing is for granted.You knew it back then but now you realize it and you are having this experience.

I found in my kc way Doctor Kanellopoulos and i performed the treatment.I can drive at night and to dark roads with my own car lights,i can do whatever i want and thats i think is a success.

For the rest of the people in this world,that is for granted.They dont think it all.Anyway,linda i dont wanna tire you at all but we need to help each other.People dont seem to get it and that is the reason that this world has an expiration date.

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Date: Thu Nov 15 12:56 PM, 2007
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Linda, I think all the KC parents feel the same way, we would much rather have gotten the disease ourselves than see our children afflicted. There is no answer to the why question, I guess. It is very frightening to see rapidly progressing KC. I realized how bad my son's sight was when I took him on the plane for his treatment, he could barely navigate around the airport to find the restroom without my help. When I saw him in the recovery room after his crosslinking+intacs, he whispered to me "The ghosting in my vision is already much fainter!"

Zeus is very wise, there is nothing but the truth in what he says.

I know you will be strong and support your son, and that we, the members of this community will support you.

Where I live in the US, people are so materialistic, always buying newer and bigger and throwing out the old, and thinking less of people whose "things" are not shiny and new and trendy like theirs. I think sometimes people around me look at us funny, as our cars are old and not luxury brands, our clothes are not up to date with current fashion, etc. But, we were able to give our son a shot at retaining his corneas and improving his vision (because we have always worked hard, and live rather simply), and that gives me tremendous peace of mind.

Stay strong Linda, I pray that things turn out well for your boy.

Joanne

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Joanne in NY


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Date: Thu Nov 15 6:20 PM, 2007
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Joanne and Zeus

Your kind words have been an inspiration to me. We feel strong enough to face this head on. I wish you both well and send my regards to your loved ones.

I will keep you updated

Kind Regards

Linda



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Date: Thu Nov 15 8:55 PM, 2007
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Evening,

Joanne you are so right at how you describe things...

i come from Greece and i dont speak english at a daily basis so sometimes i can not express clearly how things are.The U.S is giving the lights of materialism and the rest of the world is following.To say more this in marketing is called LADDERING.The consumer wants more and more.Where this is ends??

Before i performed the treatment,i couldnt sleep at nights.I was reading so much about kc and i was so frighten and i didnt know what to do.I couldnt speak with my parents because they couldnt understand.I didnt want to scare them because they are people who can not tolerate this situations.

I searched by myself and i found the crosslinking and the topography guided PRK treatment and Doctor Kanellopoulos gave me with both eyes open almost 20/20 vision.People in my age,i am only 22 years old are thinking all the time of going out,finding girls,go to clubs and not about corneal diseases that destroys our vision and leave us handicaped.

I have never dealt with any health problem before in my life.I was wondering all the time,what is going on...What the future hold for me?Who can understand us?Who???I couldnt tell my parents what i was reading about kc,i dont want pitty from anybody.

When now i meet a kc person i want to give all the support i have.This thing comes from my heart,i can not control it.I want to help with all my powers.Linda the first thing that your son must do is collagen crosslinking.I know i said it before but this is his only weapon to fight and save his cornea.

Best Wishes,

P.S A new method of collagen crosslinking with a system called double energy is found and blasts better the UV-A light to the cornea.They have it at Germany.So,if we reperform in the future collagen crosslinking our conrea will be more rigid than ever.I am telling that because the xlinking may last only for 10 years so a retreatment may be necessary to be absolutely certain.



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Date: Fri Nov 16 1:42 PM, 2007
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Zeus

You and alot of other people on this forum are an inspiration to me. Without your kind words and your advice I would not have coped over the last few weeks. It must have been so difficult for you without anyone to talk to when you were first diagnosed.

I cannot thank you enough.

I will let you know how we get on.

Kind Regards

Linda

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Veteran Member

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Posts: 45
Date: Sat Nov 17 2:30 AM, 2007
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Zeus,

Please don't worry about your ability to express your thoughts in English, you are doing a fine job. Your generosity in reaching out to others is heroic and inspirational, Zeus. I hope that now that your vision is restored, you will be blessed with a full and happy life. When you reach out to others as you do, you multiply the gift of your restored vision into something bigger and better because it helps so many other people. I hope that your doctor is proud of you!

Warm regards,



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Joanne in NY


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Date: Sun Nov 18 10:37 PM, 2007
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hi Linda,
my name is mariya and my boyfriend is a KC sufferer,and we live in London.my boyfriend performed crosslinking in june this year and now he wears spectacles(as before he only was wearing hard contact lensses).we are still waiting to see if the vision will improve more but even it stays on this stage it would be great.he wear his contacts(we made a new one)very rare now,and that`s why i think everything zeus said is the whole true.
the reason i am writing to you is that my boyfriend had his crosslinking done in LCRS(london clinic for refractive surgary)and dr. David Jory has performed it.i am very pleased how he is doing everything.he has the patience to explain to you whatever you need to know.
the only thing we paid was the treatment on its own.we didn`t pay for the first visit and then when we desided to go for the x-linking we had to pay.also the following ups are for free for a year.
if there is anything you wanna ask me about LCRS and dr. Jory i will be happy to help you.

take care and good luck

Mariya

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