Ehlers Danlos Syndrome Support

Ehlers Danlos Syndrome Support Target 125k Living with strength and
courage through
Ehlers-Danlos Syndrome & chronic illness Here to support, share, and raise awareness.

You're never alone together we're stronger Follow for real stories, hope, and a caring community

EDS is 'the most neglected disorder in medicine'
08/23/2026

EDS is 'the most neglected disorder in medicine'

I did an art about Ehlers-Danlos Syndrome, information below.Ehlers-Danlos Syndrome is a spectrum disorder with several ...
08/22/2026

I did an art about Ehlers-Danlos Syndrome, information below.

Ehlers-Danlos Syndrome is a spectrum disorder with several types, but it all affects the way the body builds collagen in connective tissue. Connective tissue is the binding glue, shock absorbtion, and sense of awareness of the body (both internally and externally) and it's in our skin, bones, eyes, cartilage, joints, arteries, digestive tract, and many other places. Fascia is a network of connective tissue that runs around the whole body that is responsible for lubricating and stiffening around muscles. To the naked eye, someone with EDS can look like anyone else, but microscopically, there are differences.

With all that in mind, EDS is a complicated disorder. It can present many ways, like as seemingly random ailments, frequent odd injuries, random bruising and/or stretchmarks, until the patterns are recognized, and having the disorder opens you up to other syndromes or "comorbidities." EDS cases are not often the same because everyone is an individual, with different genes and lifestyles and diets, and there are other genetic disorders that have cross-over problems, so always consult a geneticist if you suspect you have EDS or something similar.

I hope this was informative, I am not a doctor but I am personally affected by EDS and like to spread awareness when I can. It's a lot more common than currently diagnosed.

Anyone else sit like this in the car and it’s the best feeling ever
08/22/2026

Anyone else sit like this in the car and it’s the best feeling ever

my knees can go backwards (i have hypermobile ehlers danlos syndrome)(messy floor courtesy of my dog lol)
08/21/2026

my knees can go backwards (i have hypermobile ehlers danlos syndrome)

(messy floor courtesy of my dog lol)

Finally a clear, finished EDS infographic! :)
08/21/2026

Finally a clear, finished EDS infographic! :)

Big shout out to my newest top fans! 💎Betsy Pritts Ickes, Li Lozano, Vicky Collins, Dale Fewster, Laura Kelly, Pamela Ed...
08/21/2026

Big shout out to my newest top fans! 💎

Betsy Pritts Ickes, Li Lozano, Vicky Collins, Dale Fewster, Laura Kelly, Pamela Edwards, Bonnie Pember

Drop a comment to welcome them to our community,

Thanks for being a top engager and making it on to my weekly engagement list! 🎉Alyssa Fouser, Maryam Khodabandeh, Paul J...
08/21/2026

Thanks for being a top engager and making it on to my weekly engagement list! 🎉

Alyssa Fouser, Maryam Khodabandeh, Paul Johnson, Author Daisotuk, Haylley Lett, Karen Smith, Hannah Rebekah Martell, Barbara Grant, Aurora Flynn, Joe Bond, Khalil Hirthe, Norma Latham, Heather Nii, Jenna Barnes, Shawnee Tails Thomas, Danielle Gibson, Imogen Hilton, Louise Anderson, Sherry Wheeler, Alyssa Forester, Tabi Walls, Sommer Grant, Erica Andrews, Bryan Gates, Megan Kowalewski, Tara Hoke, Nikki Kilroy, Eva Marie, Tina Chapman, Percy Zervas, Christa Bonn, Morgan Wright, Joyce van den Berg, Jamie Lehton Imura, Hemali Achondo, Kimberlee Croucher, Lynn Blankenship, Alison Turjancik, Deborah Birch, Ulrika Lassagård, Lora Sheard, Jacqui Link, Tony Troskey, Katelynn Marie, Jade Sanders, Rachel Bounds, Stacey Ross, Eddy Heather Sage Roalsen, Barbara Huxley-Guilfoy, Myranda Lincoln

Iron Flame dedication 🦓Started the Empyrean series last month because I knew the main character was **heavily** implied ...
08/21/2026

Iron Flame dedication 🦓

Started the Empyrean series last month because I knew the main character was **heavily** implied to have EDS, and the author has EDS. I had only heard good things about the book, and was excited to have a main character who reflected a bit of myself!

I didn’t know if I would be into a fantasy book but I let loose and immersed myself in the story. I loved Fourth Wing! Read a library copy initially, but enjoyed it so much I bought the full series (so far).

I’m starting book 2 today and was so moved by the little dedication!

The EDS clinic says hEDS isn’t EDS 😫Ugh. I’m getting so sick of this! The EDS clinic where I live has decided that hEDS ...
08/20/2026

The EDS clinic says hEDS isn’t EDS 😫

Ugh. I’m getting so sick of this! The EDS clinic where I live has decided that hEDS isn’t real anymore.

Tell me you have EDS without telling me you have EDS
08/20/2026

Tell me you have EDS without telling me you have EDS

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