Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 04-12-2010, 07:08 AM #11
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Default CNN Hero

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Originally Posted by edever34 View Post
I just finished sending Larry King and CNN and e-mail expressing my extreme dissapointment at the fact that RSD was not even mentioned on the Heroes segment. Not to diminish Mackenzie Bearup (the teenage girl) but I stated that if she had Cancer,M S , Muscular Dystrophy Etc that if would have been mentioned. I asked them if this omission was done on purpose and to please respond back to me. I am still so angry at this missed opportunity to raise awareness that I could scream.

I am asking everyone on this site to also send e-mails to CNN.
Fondly-Carol
It seems you guys have gotten the wrong idea. The Larry King segment was always going to be a 1 minute introduction of the CNN Hero of the week, my daughter Mackenzie. She has lived with RSD for 6 years and found reading to be the only way to get her mind off her constant pain. This lead to her starting a book drive to provide books to other kids who live with different kinds of pain (emotional pain, fears etc.). The longer version of Mackenzies "hero" segment fan off and on all day Fri. and Sat.
This was never going to be a story about RSD. They did however film interviews with her Dr. and film her in a HBOT chamber etc. and have an extra piece on the CNN/heroes website and look for the extra.


They may do some follow up stories on Mackenzie. As far as the Extreme Makeover doing a story. Trust me we would not qualify.

Hope this clears up any confusion.
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Old 04-12-2010, 09:01 AM #12
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Originally Posted by babearup View Post
It seems you guys have gotten the wrong idea. The Larry King segment was always going to be a 1 minute introduction of the CNN Hero of the week, my daughter Mackenzie. She has lived with RSD for 6 years and found reading to be the only way to get her mind off her constant pain. This lead to her starting a book drive to provide books to other kids who live with different kinds of pain (emotional pain, fears etc.). The longer version of Mackenzies "hero" segment fan off and on all day Fri. and Sat.
This was never going to be a story about RSD. They did however film interviews with her Dr. and film her in a HBOT chamber etc. and have an extra piece on the CNN/heroes website and look for the extra.


They may do some follow up stories on Mackenzie. As far as the Extreme Makeover doing a story. Trust me we would not qualify.

Hope this clears up any confusion.
Thanks for pointing this out but I feel they should have pulled their 1 minute segment full circle and take 0.1 sec and say what MacKenzies's chronic illness is..Way too often RSD gets shoved under the rug..lacking noteriey it/we deserve...ultimately lacking in support and knowledge... I feel this segment left JQ public scratching their heads saying..so whats wrong with her.. ???? They filmed the painful injection but why??? We had a blip of time to make mention of RSD and we didn't get it.. Until one lives with our ugly 4 headed monster they have NO idea what it is like.. Thank goodness MacKenzie is mobile and looks health, many of us are not as lucky and if they can walk it is not a pretty walk not hold their upper body up without pain..



Kathy
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Old 04-12-2010, 09:56 AM #13
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[QUOTE=keep smilin;643416]Thanks for pointing this out but I feel they should have pulled their 1 minute segment full circle and take 0.1 sec and say what MacKenzies's chronic illness is..Way too often RSD gets shoved under the rug..lacking noteriey it/we deserve...ultimately lacking in support and knowledge... I feel this segment left JQ public scratching their heads saying..so whats wrong with her.. ???? They filmed the painful injection but why??? We had a blip of time to make mention of RSD and we didn't get it.. Until one lives with our ugly 4 headed monster they have NO idea what it is like.. Thank goodness MacKenzie is mobile and looks health, many of us are not as lucky and if they can walk it is not a pretty walk not hold their upper body up without pain..




You would be surprised at how many people have viewed the extra segment on the cnn/ heros website and sent Mackenzie emails on her website, expressing their well sishes for pain relief. Hopefully CNN will do a followup story about her later on and focus more on the RSD. Hey its a start in the right direction.
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Old 04-12-2010, 10:14 AM #14
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Default CNN.com article

Teen turns escape from pain into charity
By Allie Brown, CNN
http://www.cnn.com/2010/LIVING/04/08...rup/index.html

Last edited by Chemar; 04-12-2010 at 11:28 AM. Reason: CNN/Turner have strict copyright regulations so articles cannot be copy/pasted directly here from CNN website.
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Old 04-12-2010, 03:12 PM #15
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I was fully aware of the content of the story focusing on a way to block out an illness. My issue is this : Larry King said he would like to introduce a young girl who suffers from an extremely painful and debilating disease-PERIOD!!!!
It would have taken a NANO second to say the words RSD or CRPS.,so I still have issues,but am glad that there may be more follow ups.

Also have to agree with previous post re: showing her with Doctor getting shots and still no mention of what her ailment is. makes ME scratch my head-Carol
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Old 04-12-2010, 04:35 PM #16
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Originally Posted by edever34 View Post
I was fully aware of the content of the story focusing on a way to block out an illness. My issue is this : Larry King said he would like to introduce a young girl who suffers from an extremely painful and debilating disease-PERIOD!!!!
It would have taken a NANO second to say the words RSD or CRPS.,so I still have issues,but am glad that there may be more follow ups.

Also have to agree with previous post re: showing her with Doctor getting shots and still no mention of what her ailment is. makes ME scratch my head-Carol
Have you watched the video? In the first few seconds she tells waht she suffers from. Reflex Sympathetic Dystrophy. Check out the video on the link above.
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Abbie (04-12-2010)
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