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The Ehlers-Danlos Society  We are a nonprofit organization serving the global community to affect change and progression in the world of Ehlers-Danlos syndromes.

http://www.ehlers-danlos.com/

We captured many powerful images of people living with EDS and HSD at our photo shoots this weekend. Thank you to all of our amazing models!
#PhotoShoot #EDSModel #WhatEDSLooksLike #EhlersDanlos #EhlersDanlosSyndromes #EDS #EDSAwareness #hEDS #vEDS #vEDS #ChronicIllness #Spoonie #ZebraStrong #DazzleTogether #ChronicPain

We captured many powerful images of people living with EDS and HSD at our photo shoots this weekend. Thank you to all of our amazing models!

#PhotoShoot #EDSModel #WhatEDSLooksLike #EhlersDanlos #EhlersDanlosSyndromes #EDS #EDSAwareness #hEDS #vEDS #vEDS #ChronicIllness #Spoonie #ZebraStrong #DazzleTogether #ChronicPain

@Regranned from @chroniczebra - This morning I had my port placed! I was worried about complications due to my mast cell disease and Ehlers Danlos Syndrome, but all went smoothly with premedication! I was in and out within 4 hours. I’m feeling very tired and sore now, but nothing tramadol can’t fix! Excited for my nurse to come later to set up my fluids 🙌 looking forward to having this port of health 🌱 #mastcelldisease #mastcellactivationdisorder #mastocytosis #dysautonomia #potssyndrome #IVfluids #potsie #spoonie #chronicillnesswarrior #ehlersdanlos #hashimotos #sjogrens #centralline #powerport #autoimmunedisease #chronicillness #disability #invisibleillness #zebrastrong @ehlers.danlos - #regrann

Meet the Ehlers-Danlos Comorbidity Coalition! The first PCORI-funded in-person meeting wrapped up yesterday in Hershey, Pennsylvania.
For more information on this project: ehlers-danlos.com/pcori-funding-award/

#PCORI #EDSResearch #POTS #Dysautonomia #MCAD #MCAS #Chiari #EhlersDanlos #EhlersDanlosSyndromes #EDS #EDSAwareness #hEDS #vEDS #vEDS #ChronicIllness #Spoonie #ZebraStrong #DazzleTogether #ChronicPain

THANK YOU!

With the help of our friends, volunteers, donors, and professionals, 2017 was our most productive year ever. We broke new ground through increasingly global collaborative research, education, and awareness, we are making persistent progress towards better diagnosis, treatment, and care.

Take a look at what we achieved together in 2017 at ehlers-danlos.com/2017-review/

#NewYear #ThankYou #2017Review #EhlersDanlos #EhlersDanlosSyndromes #EDS #EDSAwareness #hEDS #vEDS #vEDS #ChronicIllness #Spoonie #ZebraStrong #DazzleTogether #chronicpain

@Regranned from @thehopefulchronic - The toughest morning but making it working for us.. quite literally!! •



Travelling with chronic illness can be the most exhausting experiences. Standing and waiting in queues with PoTS is never a good combination, the long tiresome early starts and traveling to your destination certainly do not aid the chronic fatigue, airport food doesn't exactly cater for my stomach, and add in a lot of luggage and one boyfriend wheeling me round the airport, would usually be a recipe for disaster. Yet, we manage to make it work for us (just about!!) •





#thehopefulchronic #travelling #spoonie #sickchick #eds #disability #disabled #ehlersdanlos #ehlersdanlossyndrome #flight #travel #travelphotography #travelstagram #lifestyleblogger #lifestyle #cfs #me #ms #chrons #ibs #leakygut #sibo #slowtransitcobstipation #invisibleillness #chronicillness #warrior #chronicpain #pots #potssyndrome #posturalorthostatictachycardiasyndrome

@Regranned from @thehopefulchronic - Here's a photograph of me roasting marshmallows on the fire on our mock "Christmas Day" with my partners parents. •

Despite the obvious (and lots more less-obvious) signs that I am chronically sick, I shall forever be thankful just to enjoy simple moments like these with my loved ones. •

So that's it, just a photograph of me with no other message than- yes, sometimes social media is "unrealistic" but this is a raw as it gets. No props, no poses, just a genuine grateful smile for something so simple yet I am so happy and thankful I am doing.





#thehopefulchronic #christmas #me #spoonie #blogger #blog #spoonieblogger #fire #photography #happy #simplethings #grateful #hope #fit #healthy #fitfam #photograph #christmastree #love #blog #fibro #chrons #leakygut #sibo #ms #disability #family #familytime #invisibleillness #advocate

Happy Holidays from all of us at the Ehlers-Danlos Society!

Leading to the September 2018 International Symposium in Ghent, the Consortium’s work will be focused on developing a set of Common Data Elements (CDEs) to use as the basis for future collaborative research on the Ehlers-Danlos syndromes and related disorders.

Read more here: ehlers-danlos.com/2018-CDEs

#EDS #EhlersDanlos #EhlersDanlosSyndromes #EDSAwareness #HSDAwareness #HSD #HEDS #CEDS #VEDS #Hypermobility #ZebraStrong #Spoonie #InvisibleDisability #ChronicPain #CDE #CommonDataElements #Research #EDSResearch #EDSIntlConsortium

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