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 Excellent source of EDS clinical info 
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Dessert Spoon

Joined: Fri Jan 13, 2006 9:21 pm
Posts: 705
Location: New Jersey US
Post Excellent source of EDS clinical info
I found this source awhile ago but :oops: 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.


Sat Aug 18, 2007 6:36 am
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Crystal Spoon
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Joined: Thu Jan 11, 2007 9:25 pm
Posts: 9262
Location: Connecticut...part-time Texan...and French at heart :)
Post 
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.

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~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 :arrow:


Sat Aug 18, 2007 8:36 pm
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Dessert Spoon

Joined: Fri Jan 13, 2006 9:21 pm
Posts: 705
Location: New Jersey US
Post 
?? 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.


Sun Aug 19, 2007 6:42 am
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Crystal Spoon
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Joined: Thu Jan 11, 2007 9:25 pm
Posts: 9262
Location: Connecticut...part-time Texan...and French at heart :)
Post 
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 :arrow:


Sun Aug 19, 2007 9:17 pm
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Dessert Spoon

Joined: Fri Jan 13, 2006 9:21 pm
Posts: 705
Location: New Jersey US
Post 
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.


Mon Aug 20, 2007 5:31 am
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