All of us Vs Keratoconus


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Post Info TOPIC: KC Parent


Senior Member

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Posts: 124
Date: Mon Nov 12 10:28 PM, 2007
RE: KC Parent
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Hello linda.

From the things i read on your last post and the number 47 of your son topography your son SHOULD PERFORM COLLAGEN CROSSLINKING.This treatment linda is A UV-A LIGHT with a topical solution OF RIBOFLABIN B2 AND THIS STRENGTHEN THE CORNEA OF YOUR SON AT ABOUT 300%.The cornea flattens AND BECOMING MORE RIGID THAN EVER.

ITS A SIMPLE TREATMENT and NOT AT ALL INVASIVE.

Linda i think that you SHOULD GO TO CENTRAL LONDON.ITS A LIFETIME DECISION AND YOU SHOULD GO TO DOCTOR DAVID JORY.WE are talking about your son and HE IS ONLY 11 YEARS OLD.

Sorry for saying that but i got to ask..How is your finance?

If you havent got any money i think i can help you a little bit.Please ask and find a Doctor who is CAPABLE OF PERFORMING CROSSLINKING.

THIS IS THE NEW TREATMENT FOR KC IN ALL DEVELOPED COUNTRIES LINDA.

I am teling you at about the COST IN GERMANY-DRESDEN.It is BELOW 1000euros FOR BOTH EYES.Its almost anything linda for your son eyes.I THINK THAT GERMANY AND DRESDEN IS YOUR FIRST CHOICE.THEN CENTRAL LONDON AND DOCTOR DAVID JORY.

Best Wishes,

P.S please if you need some money we will help.Sorry if i misunderstood.








-- Edited by Zeus at 22:35, 2007-11-12

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Senior Member

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Posts: 124
Date: Mon Nov 12 11:24 PM, 2007
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Also,Linda i forgot to give you some emails.

This email is Doctors David jory: david.jory@lcrs.co.uk

And this email is TO OUR GOD which found the treatment of KC:Theio Seiler.
theo.seiler@iroc.ch

PLEASE LINDA COMMUNICATE WITH THIS PEOPLE.TELL THEM THAT YOUR SON IS ONLY 11 YEARS OLD.

You are the best and your son is counting on your decision SO MAKE THE BEST DECISION BY SPEAKING WITH THIS PEOPLE AND LEARN MORE ABOUT THE TREATMENT.

Best wishes,





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Veteran Member

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Posts: 45
Date: Tue Nov 13 1:00 AM, 2007
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Linda, I am also a KC parent, and my son was diagnosed and treated at 22. I agree with Zeus, please make every effort to get to a doctor who performs crosslinking before you make any decision about your child's eyes. My experience is in the US where it is harder to find doctors who do this, but the first cornea specialist we saw at a highly respected research university first denied even knowing about it, and then told us it does not work. It was at that point that I began my online investigations.

My son has intacs and collagen crosslinking, and the progression has stopped thus far and his vision is greatly improved. Of course no one but a doctor can tell you if your child is a candidate, but Zeus is giving you a good tip. Please contact one of the doctors over there who does this procedure before you commit to any course of treatment!

In the meantime, my thoughts and prayers are with you my dear. Please know that there are other moms out around the world who have been down this road, and we all hold you in our hearts.

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Joanne in NY


Optometrist

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Posts: 67
Date: Tue Nov 13 2:04 PM, 2007
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I think it's all been said - crosslinking would definitely seem like a good option, particularly in a younger patient but you would have to discuss in details with a specialist who has seen your son and taken the necessary measurements before you can make an informed choice. Unfortnately this is not covered by the NHS, whereas corneal transplant is (despite lower success rates and higher costs) so you would have to go private and as mewntioned elsewhere going abroad is a possibility worth consideration. Not all patients are suitable for cross linking - if the corneal thickness is below the min. required or there is extensive corneal scarring it may not be the best treatment method. As said I think if possible you should definitely look into it - with a consultation preferably and take it from there. RGP lenses may prove uncomfortable for your son so ensure they are fitted my a contact lens specialist as opposed to a high street optician (unless they are a specialist).
Best wishes to you and your son - feel free to ask any questions and I'll answer the best I can
Alan

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Member

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Posts: 9
Date: Tue Nov 13 9:42 PM, 2007
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Thank you all for your advice.

I would like to take this opportunity to give you all a brief history of my circumstances. I live in the North East of England. I have three children one of which is a very severe asthmatic I have oxygen in my home for her. My husband works full time as a carer for disabled adults and I work part time. We don't have a great deal of money however we are prepared to try and help my son in any way we can. To be honest I don't think i could afford to travel to London and have on going private treatment. When I found out he had KC I was so worried I felt I could'nt wait to see the consultant on the NHS so I booked an appointment to go to a private hospital only to see the same consultant. I feel his care is very good however with respect to him he is working in an NHS hospital. He did put us back on the NHS books after telling us that private treatment is very expensive.

That was hard work considering I am typing with a broken wrist.

I will however E mail Dr David Jory and find out more info.

All I can say now is thank you so much for taking the time and interest to reply to me.

Kind Regards to you all

Linda

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Senior Member

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Posts: 124
Date: Wed Nov 14 1:23 AM, 2007
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Hello linda.

How much the travel tickets costs to go to central london?Is there a train to catch?I dont know this details.

I am hearing that your pay jobs in London have bigger wages than in the rest Europe.Also,an another thing that life in London is far more expensive than in other countries.I dont know where is the truth or the lie.Also,some reports refer that in London the unemployment is 0%!!!!!I was thinking of doing a postgraduate study at Finance or Marketing and starting a career.

But Linda we are talking about 1000euros or maybe 2000euros.I think that is an average amount of money.I dont think it is difficult to raise that money.I maybe wrong.Anyhow,i can give you some money if you want.Please email me kapamaru13@hotmail.com

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Member

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Posts: 9
Date: Wed Nov 14 12:06 PM, 2007
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Zeus

I am going to E mail Dr Jory to find out exactly how much it would cost for an appointment to see if my son would be suitable for the treatment. After all I don't think that there is any parent who would'nt travel the world to get the best treatment for their loved ones. I will raise the money somehow to get the best for him. I have never come across anyone who has shown such kindness after all we are strangers The travel to London is not a problem we have a reliable car the first appointment is again not a problem however the treatment could be a problem. I will E mail him and find out exactly how much it costs.

To conclude in London the cost of living is much higher than it is in the north east. It would be a big step for us to go to the Capital a step however that is not impossible after all we are talking about my sons sight. It has deteriorated rapidly and I am told the younger you get KC the faster it develops. From a mothers point of view I am naturally very worried and trying to stay strong for his sake.

Once again I cannot thank you enough for your offer after all it is not every day you come across such generosity.

I will keep you updated

Kind regards

Linda

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Senior Member

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Posts: 124
Date: Wed Nov 14 7:10 PM, 2007
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Linda all the people i know is thinking that only money counts.

I think that they never dealed with a health problem but moreover an eye problem.Then i want to see their faces...Kc people are all in my heart and the time i was diagnosed with kc i didnt have any support by anyone,now when i meet someone who has kc or a relative even from the internet i want to give him all my support.

It isnt anything for me to give you a partial amount of money for the treatment.I think i can afford it.

The thing you need to know is that COLLAGEN CROSSLINKING IS YOUR SONS WEAPON to fight keratoconus.

Best Wishes,


P.S Try to save money from now and maybe explain Dr David Jory your fincance and tell him that you are a member of this forum.

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