ehlers.danlos ehlers.danlos

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

VASCULAR EDS: MAKING EACH DAY COUNT "For however long God gives me on this earth; I would like to make each day count. If I educate just one person a day or even a week, when my time here is over, my family will be able to say she made a difference in at least one person’s life." Read Crystal's #myEDS story at ehlers-danlos.com/crystaln

#EhlersDanlos #ChronicPain #hypermobile #hypermobility #EhlersDanlosSyndromes #pain #EDS #EDSAwareness #ChronicIllness #Spoonie #ZebraStrong #DazzleTogether #Zebra #vEDS

A TRIBUTE TO GRACE "In some ways, the race was a metaphor for how determined Grace is in life. No matter what is thrown at her—rain, sleet, snow, or EDS—she gets through it with a spirit and outlook that is unique to her." Read Amanda's #myEDS story at ehlers-danlos.com/amanda

#EhlersDanlos #ChronicPain #hypermobile #hypermobility #EhlersDanlosSyndromes #pain #EDS #EDSAwareness #ChronicIllness #Spoonie #ZebraStrong #DazzleTogether #Zebra #running #vEDS

IT ALL STARTED IN FIRST GRADE "As of right now, I’m glad that, even after 8 years, I finally got my diagnosis. I still have a lot of problems day-to-day, but I’m working as hard as I can to manage my symptoms." Read Spencer's #myEDS story at ehlers-danlos.com/SpencerR

#EhlersDanlos #ChronicPain #hypermobile #hypermobility #EhlersDanlosSyndromes #pain #EDS #EDSAwareness #ChronicIllness #Spoonie #ZebraStrong #DazzleTogether #Zebra #hEDS

COMMON THINGS ARE COMMON – EXCEPT WHEN THE DIAGNOSIS IS RARE "I want to share with you the journey to my diagnosis, as well as my experiences of vEDS as a patient but also as a doctor." Read Gemma's #myEDS story at ehlers-danlos.com/GemmaH

#EhlersDanlos #ChronicPain #hypermobile #hypermobility #EhlersDanlosSyndromes #pain #EDS #EDSAwareness #ChronicIllness #Spoonie #ZebraStrong #DazzleTogether #Zebra #vEDS

TO HONOR ANOTHER "After all is said and done, these are my biggest hopes as a Zebra: to honor Shannon’s life. To never doubt a person who claims something is clinically wrong with them, even if they don’t know why." Read Kat's #myEDS story at ehlers-danlos.com/katf

#EhlersDanlos #ChronicPain #hypermobile #hypermobility #EhlersDanlosSyndromes #pain #EDS #EDSAwareness #ChronicIllness #Spoonie #ZebraStrong #DazzleTogether #Zebra #hEDS #vEDS

HI, I'M CHRONICALLY ILL "Sometimes I wish I had purple and pink stripes all over my skin, or a note taped to my back that says “Hi, I’m chronically ill, please exclude me from (insert list)” signed, with love, by my doctor." Read Skylar's #myEDS story at ehlers-danlos.com/SkylarH

#EhlersDanlos #ChronicPain #hypermobile #hypermobility #EhlersDanlosSyndromes #pain #EDS #EDSAwareness #ChronicIllness #Spoonie #ZebraStrong #DazzleTogether #Zebra #hEDS

I WANT TO LIVE, NOT JUST SURVIVE "I cried in the doctor's office, not because I learned that I had an illness without a cure, a genetic disease, that I will have to deal with my all life. No no, I cried because I wasn't crazy. It wasn't in my head!" Read Camille's #myEDS story at ehlers-danlos.com/camillea

#EhlersDanlos #ChronicPain #hypermobile #hypermobility #EhlersDanlosSyndromes #pain #EDS #EDSAwareness #ChronicIllness #Spoonie #ZebraStrong #DazzleTogether #Zebra #hEDS

MY BODY DOESN'T HAVE AN EXPIRATION DATE "I felt validated, angry and scared. The body I powered through life with was falling apart…literally. Did I just hit my expiration date?" Read Tiffiny's #myEDS story at ehlers-danlos.com/tiffinyh

#EhlersDanlos #ChronicPain #hypermobile #hypermobility #EhlersDanlosSyndromes #pain #EDS #EDSAwareness #ChronicIllness #Spoonie #ZebraStrong #DazzleTogether #Zebra #hEDS

A PHYSICIAN ON A MISSION "I am a much different doctor now – honestly, I thought I was good before EDS – but I understand the fear and helplessness of having doctors look at you like “it’s all in your head”." Read this #myEDS story by Dr. Rachel at ehlers-danlos.com/DrRachel

#EhlersDanlos #ChronicPain #hypermobile #hypermobility #EhlersDanlosSyndromes #pain #EDS #EDSAwareness #ChronicIllness #Spoonie #ZebraStrong #DazzleTogether #Zebra #hEDS

THE DAY I HAD A NAME FOR IT "The room was starting to spin. When did I get sick? How long had I been in pain? Was it… always?" Read Madora's #myEDS story at ehlers-danlos.com/MadoraP

#EhlersDanlos #ChronicPain #hypermobile #hypermobility #EhlersDanlosSyndromes #pain #EDS #EDSAwareness #ChronicIllness #Spoonie #ZebraStrong #DazzleTogether #Zebra #hEDS

THE ONLY BODY I HAVE "There came a point in my life when I realized that this body belonged to me. I have this body, it is mine to do with it what I please, but it is also the only one I have. I can spend my life tearing it down, or letting it tear me down, or I can put up just enough resistance to work at keeping both of us upright." Read Shannon's #myEDS story at ehlers-danlos.com/ShannonB

#EhlersDanlos #ChronicPain #hypermobile #hypermobility #EhlersDanlosSyndromes #pain #EDS #EDSAwareness #ChronicIllness #Spoonie #ZebraStrong #DazzleTogether #Zebra #hEDS

I CAN SURVIVE "This was the card I was dealt. Sure, it might not be the easiest card, but it’s doable. I can survive this. And I will survive this." Read Molly's #myEDS story at ehlers-danlos.com/MollyM

#EhlersDanlos #ChronicPain #hypermobile #hypermobility #EhlersDanlosSyndromes #pain #EDS #EDSAwareness #ChronicIllness #Spoonie #ZebraStrong #DazzleTogether #Zebra #hEDS

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