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koralsgigi
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Post subject: Excellent source of EDS clinical info Posted: Sat Aug 18, 2007 6:36 am |
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| Dessert Spoon |
Joined: Fri Jan 13, 2006 9:21 pm Posts: 705 Location: New Jersey US
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I found this source awhile ago but  forgot about it. It is quite a cool combination of clinical yet clearly stated information so I know it will be appreciated by the vast knowledge base here! It is from Gene Reviews, a genetic laboratory source.
It really goes into the specifics and the "nitty-gritty", with lots of detail even detailing the characteristics of "EDS-type" dis/subluxations"...
this is hypermobility type: http://www.geneclinics.org/servlet/acce ... tails.html
this is classic type: http://www.genetests.org/servlet/access ... index.html
There is a "resource" option which lists some that many may know and others not, like: EDNF, Canadian EDF, UK EDS Support Group, NIH Library EDS genetics page, as well as EDS medical statements from around the world.
_________________ *WARNING:Compulsive empath and researcher;Please be patient and do not be offended* "Who can protest and does not is an accomplice in the act" Talmud
EDS-Classical, aortic/mitral/tricuspid regurg, Meniere's, asthma, depression, PA, etc.
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ReineDeLaSeine14
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Post subject: Posted: Sat Aug 18, 2007 8:36 pm |
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| Crystal Spoon |
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Joined: Thu Jan 11, 2007 9:25 pm Posts: 9105 Location: Connecticut...part-time Texan...and French at heart :) Blog: View Blog (1)
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i believe these were the same links i posted earlier...but never hurts to redo it because they are the BEST!!!
my doc read the whole 23pgs of HEDS...but i find it forgets all of that in the CEDS section...because the HEDS article seems to overlap into things it shares with CEDS but that section doesn't mention it.
_________________ ~Stephanie~
Unknown genetic disorder causing EDS, Dysautonomia, Asperger's Syndrome and other wacky things (ie. seizures, vision impairments, JRA) Also have Bipolar I, Borderline Personality Disorder, EDNOS and some other stuff.
I am rarely here so if you wish to speak to me please use my email provided in my profile. Thanks
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koralsgigi
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Post subject: Posted: Sun Aug 19, 2007 6:42 am |
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| Dessert Spoon |
Joined: Fri Jan 13, 2006 9:21 pm Posts: 705 Location: New Jersey US
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?? Since they are written for and by genetic diagnostic labs, for testing and diagnostic guidelines, they are meant to be used concomitantly. This should be self-explanatory for them.
It is hard to know what was posted when sometimes......Just getting a bit tired and perhaps a tad too old 
_________________ *WARNING:Compulsive empath and researcher;Please be patient and do not be offended* "Who can protest and does not is an accomplice in the act" Talmud
EDS-Classical, aortic/mitral/tricuspid regurg, Meniere's, asthma, depression, PA, etc.
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ReineDeLaSeine14
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Post subject: Posted: Sun Aug 19, 2007 9:17 pm |
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| Crystal Spoon |
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Joined: Thu Jan 11, 2007 9:25 pm Posts: 9105 Location: Connecticut...part-time Texan...and French at heart :) Blog: View Blog (1)
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yeah i had given my doc the HEDS article but it had a lot of Classical stuff in there too...
and then when i was "upgraded" lol...i printed out the exclusive CEDS stuff.
_________________ ~Stephanie~
Unknown genetic disorder causing EDS, Dysautonomia, Asperger's Syndrome and other wacky things (ie. seizures, vision impairments, JRA) Also have Bipolar I, Borderline Personality Disorder, EDNOS and some other stuff.
I am rarely here so if you wish to speak to me please use my email provided in my profile. Thanks
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koralsgigi
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Post subject: Posted: Mon Aug 20, 2007 5:31 am |
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| Dessert Spoon |
Joined: Fri Jan 13, 2006 9:21 pm Posts: 705 Location: New Jersey US
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That makes sense. Sometimes you have to feed resources to them in ways we have learned they can "chew" it 
_________________ *WARNING:Compulsive empath and researcher;Please be patient and do not be offended* "Who can protest and does not is an accomplice in the act" Talmud
EDS-Classical, aortic/mitral/tricuspid regurg, Meniere's, asthma, depression, PA, etc.
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