the ehlers-danlos society

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

lara.bloom@ehlers-danlos.com

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