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Post Info TOPIC: 14 year old son with KC


Veteran Member

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Posts: 93
Date: Wed Dec 1 8:48 PM, 2010
RE: 14 year old son with KC
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This is some real brillant work your doing Joanna. More powerto you !!

I have a look at your facebook page and its great to see !

Here it is - Keratoconus Awareness Group of Ontario - Everyone in Canada this is the chance to do some good, just join up and join in !

We are all patiets or will be (of some kind!!) !!!

Bob

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Member

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Posts: 22
Date: Wed Dec 8 12:32 PM, 2010
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Hi Bobby,
Thanks for your vote of confidence!!  This message gave me gave me courage to continue.  Its so hard to keep at it when we only get slammed down by the people that are suppose to help.  I was told to not look at the emotional side of Keratoconus but more at the facts.  Well, I wish our officials would look at these websites so they could see that the fact is, it is emotional to see people losing their sight. I hope more people join our facebook page. I always say: "The more people, the stronger our voice"!
Thanks again, Bobby

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Executive

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Posts: 155
Date: Wed Dec 8 9:57 PM, 2010
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Its people like Joanna who make he worlkd go round !!

The vision in KC is not Human ! it janggles your emotions to the core !

What is approved for KC ?? what is covered  by inssurance ? IS TOTAL TISSUE REMOVAL (AS IN A PK CORNEAL TRANSPLAT!!)

EVERYTHING CAN BE TRIED BEFORE HAND TO AVOID ONE !!! AND IN THEV REMOTE CHANCE THAT ONE IS STILL NEEDED A CORNEAL TRANSPLANT CAN BE DONE !!!

THE LEAST INVASIVE FIRST !!

Sorry Joanne, I just needed to get that off my chest !! - you do what ever you feel is needed for your sons best intesests !! you are a great mum !!

Remember a hard lens can be damaging (which can lead to a transplant!)

But check out soft lenses like the flex lens from Walman (you should be able to get them over there) or even try Wellington eye clinic in Ireland as they treated a child there with Keraflex only weeks ago.

Best regards

Wayne

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Member

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Posts: 22
Date: Mon Jan 10 1:54 AM, 2011
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Hi,
I'm still waiting for government response to a letter sent on my behalf from my MP. That was September 17th,2010. I am now going to the local media. They are going to interview me on Wednesday Jan. 12, 2011. I will let you know if it actually goes to press. I am going on to my 3rd year of trying to have Keratoconus recognized by the Canadian Government. It is a terribly slow process.
Keeping up the fight,
Joanna


-- Edited by Joanna on Monday 10th of January 2011 01:55:26 AM

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Member

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Posts: 11
Date: Mon Jan 30 3:28 AM, 2012
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Joanna, thats some fanststic work your doing - wishing you the best and you son.

Penny



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Member

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Posts: 22
Date: Mon Jan 30 8:44 AM, 2012
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Wow...my last post was a year ago.  I did go to the media.  We were interviewed by our local paper.  We had such a great response from being on the front page that our local TV station also interviewed us.  It was a great experience but unfortunatly our government is still not helping us.  They did organize a study on Corneal Cross Linking and the benefits but the outcome has not yet been released.  I am still writing and I have our support group on facebook so hopefuly Keratoconus patients will have financial support soon.  



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Member

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Date: Mon Jan 30 8:48 AM, 2012
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Here is the article that was in our local paper:

http://www.bramptonguardian.com/community/health/article/931285--family-puts-spotlight-on-disease

 

Joanna



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Member

Status: Offline
Posts: 11
Date: Mon Jan 30 7:49 PM, 2012
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Thanks for your note Joanna, the article is a great read.

I made it clickable below

http://www.bramptonguardian.com/community/health/article/931285--family-puts-spotlight-on-disease

If there was more like you there would be no KC! smilesmilesmile

Penny



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