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The Ehlers-Danlos SocietyThe 2017 EDS Classification: What does it mean for us?December 2017
Ville Franche 1997
NYC2017
Diagnostic Criteria History
20 years of neglect
My doctor doesn’t know what EDS is
My doctor just thinks EDS
means I am bendy with no multi-systemic
issues
My doctor doesn’t know what EDS is
My doctor just thinks EDS
means I am bendy with no multi systemic
issues
I can’t get the management and care
I need
My doctor doesn’t know what EDS is
My doctor just thinks EDS
means I am bendy with no multi systemic
issues
I can’t get the management and care
I need
My doctor doesn’t know what EDS is
No one believes me
My doctor just thinks EDS
means I am bendy with no multi systemic
issues
I can’t get the management and care
I need
My doctor doesn’t know what EDS is
No one believes me
I am becoming more and more
disabled and sick
My doctor just thinks EDS
means I am bendy with no multi systemic
issues
I can’t get the management and care
I need
My doctor doesn’t know what EDS is
No one believes me
My family and friends don’t get it
I am becoming more and more
disabled and sick
My doctor just thinks EDS
means I am bendy with no multi systemic
issues
I can’t get the management and care
I need
My doctor doesn’t know what EDS is
No one believes me
I can’t work, I want to socialise, I
can’t live a ‘normal’ life
My family and friends don’t get it
I am becoming more and more
disabled and sick
Ghent 2012 Glasgow2015 NYC
2016Ghent 2018
TIMELINE
EDS UK
EDNF
Creation of The Ehlers-Danlos Society
CONFIDENTIALMarch 14, 2017 11
13
•18 papers •96 medical professionals •20 year wait •From 6 to 13 types •HSD introduced •EDS rare - HSD common •Management & care guidelines
15
Webinar - 18,500 views Reached 110,662 people
Press Conference - 27,000 views Reached 69,871 people
OUR HOPE
PREVENT MISAND UNDER
DIAGNOSIS IN THE MEDICAL
WORLD
GAIN CREDIBILITY
ANDRESPECT
INTRO OFHSD -ALLOW
ALL TO BE MANAGED
AND VALIDATED
PREVENT OVERDIAGNOSIS IN THE PATIENT
WORLD -DR. GOOGLE
BETTERDATA FORREGISTRY
PROVE PREVALENCE
CONFIDENTIALMarch 14, 2017 17
Old New
Ehlers-Danlos syndrome the Ehlers-Danlos syndromes
Hypermobility EDS Hypermobile EDS
HEDS / VEDS / CEDS hEDS / vEDS / cEDS
Joint Hypermobility Syndrome Hypermobility Spectrum Disorders
Type 3, III, 4, 2, etc. Please do not use numeral descriptors. It will now be Hypermobile, Classical, Vascular, etc. or hEDS, cEDS, vEDS, etc.
New Terminology
D I S S E M I N A T I O N
Contact
www.ehlers-danlos.com
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