25 Pictures That Show What Ehlers-Danlos Syndrome Really Looks Like


Editor’s note: The Ehlers-Danlos Society does not recommend performing or showcasing hypermobile “tricks” as this can cause long-term damage to the joints.

What do the Ehlers-Danlos syndromes “look like?” It’s a question that can have many answers. Some symptoms of the 13 types of EDS are visible; for example, hypermobility and easy bruising. Other symptoms aren’t so visible, like chronic pain, organ rupture and co-morbities like postural orthostatic tachycardia syndrome (POTS). But whether your symptoms are visible or invisible to others, all are valid and all can be misunderstood by people who may not understand the effect these symptoms can have on your life.

We partnered with the Ehlers-Danlos Society to ask our Facebook communities to share a photo of what their EDS looks like. It’s clear that while there are many similarities in how EDS presents itself in different people, there is also great variety — and so many of an EDS-er’s health challenges are not easily seen by others. An EDS “zebra’s” physical symptoms may be hidden, but their courage in facing this condition is clear.

Here are the photos they shared with us:

1. “What people cannot see. What we conceal is not obvious to the rest.”

girl wearing black dress showing knee brace

2. “With EDS you never know how you might feel in the next few hours, the next day, next week, next month… You might be able to walk, dance, and the next you are so weak and in so much pain you cannot leave the bed. People judge when we are seen walking after parking in a special parking space.”

black and white photo of girl standing and of her sitting in wheelchair

3. “My little zebra warrior type 2 and 3. Diagnosed at 7 and me at 40 last year. I have had problems since age 2 but not diagnosed until many years after having my son. I was always just that clumsy, accident prone kid.”

boy demonstrating stretchy skin and bending back his wrist

4. “Most people wouldn’t assume I’ve had multiple shoulder surgeries, including a total reconstruction, and countless spinal and nerve-related procedures to control pain. No one would guess that I am in practically intolerable pain day in and day out. EDS doesn’t necessarily look like anything on the outside. It looks like you and me!”

woman wearing gym clothes making a fist to show off bicep

5. “One of my three sons, who all including me have EDS type 3.”

young boy showing hypermobile elbows

6. “I [experience] subluxations, migraines (just got over a 13-day one) chronic pain and a fair few other bits. People always say ‘you don’t look disabled.’”

selfie of woman standing by window

7. “This is what Ehlers-Danlos syndrome looks like. A seemingly healthy person who had already experienced several dislocations by the time this picture was taken that day.”

woman standing in library

8. “In spite of all the silversplints on the left, still being able to do the thingy on the right with ease. Just shows how easily my MCPs and PIPs manage to dislocate right through the splints. They do some good but don’t keep the joints in place completely.”

fingers with silver splints

9.Easy bruising. I leaned against furniture while rearranging my basement. Next day my legs looked like this. I get a lot of large ugly bruising with no pain or recollection of getting them.”

bruises on legs

10. “For me, it means wearing my braces and wraps and tape even when I hate getting strange looks, questions, and comments. Protecting my body so I can be the best mom I can be is so important, but it’s not easy. Moments when my disease gets to be just a part of me, instead of the most obvious part of me, are the best. Here I am with my husband at my best friend’s wedding.”

woman wearing neck brace with arm around husband

11. “The not-so-invisible bit of EDS type 3.”

woman standing on boat wearing sling on arm and tape on knees

12. “People always ask how my skin is so radiant being a male. They believe I look awesome. But reality is different. Having your veins visible is not sign of beauty, it’s sign that you [might have] EDS.”

man sitting in car

13.EDS looks like strength, determination and willpower. It looks like the ability to get past everyday chronic pain and still live your life to the fullest. It looks like the ability to hear people tell you that you ‘can’t do that’ or ‘will never be able to become that,’ and then find a way to prove them wrong. This picture was taken less than a month before my fifth surgery to replace and repair tendons, ligaments and muscles that continuously fail in my shoulders and back. But I found a way to live my life that day.”

woman standing on log in woods

14. “Ehlers-Danlos syndrome vascular type because it’s not just about hypermobility. This was me after an operation to replace a dissected aorta last year. The operation saved my life but left me with permanent paraplegia. Vascular Ehlers-Danlos syndrome completely changed my life.”

woman wearing mask over nose and mouth in hospital bed

15. “My three handsome guys, my little EDSer is in the blue, can’t you tell.”

father with arms around two young boys

16. “Bending all the wrong ways. (This is an old photo, please don’t do ‘tricks’ like this just for fun.)”

woman sitting on floor bending her knee back the wrong way

17. “Classical EDS… sorry for the picture, but it is my reality.”

woman's legs with bruises on knees and thigh

18. “Spoonies feel they have to hide for fear of judgment from the able-bodied community. I have regular IV fluids for POTS caused by my EDS, regular scans on my heart to check it is still working fine, regular nebulisers because my immune system can’t handle something as simple as the common cold. I have to strap most of my joints in a feeble attempt to keep them in place. And I do all of this without most people noticing/I’ve got so good at faking it that people don’t notice I’m sick! All they see is this.”

photos of girl wearing oxygen mask and iv next to photo of girl wearing a black and white dress

19.It’s not an optical illusion; this is my connective tissue failing to hold me together properly. Sometimes I try to imagine what it would be like to be able to to trust my body. How wonderful it would feel to simple stick my hand out of the car window and let my fingers ride the wind…”

elbow bending backwards

20. “HEDS isn’t just bendy joints and stretchy skin. I have multiple failing organs from it and am fed through my veins!”

girl standing next to iv pole in kitchen

21. “So many tests. Wires all over the place all the time. This time a 96-hour EEG to try to get answers for a very scary ER trip two months ago. Yet I’ll still get dressed to hide it so no questions just like with any other thing. Just like most I’ve done this with a holter monitor, braces, and kt tape to conceal what’s really going on to appear ‘normal.’”

photo of girl wearing bandage on head and photo of her wearing a hat and scarf

22. “Three generations of EDS together. My Nan is 96! We all look OK, but we all have our problems. They just aren’t always obvious.”

grandmother, mom and daughter by couch at party

23. “Old pic but they still do the same thing… dislocated and twisted round… no pain from this, but my hands do feel tight and they are by far the least of my problems with EDS.”

hand on newspaper with pinky bending the wrong way

24. “My 19-year-old son Caleb carrying a full cup of coffee. This is natural/comfortable to him. If the outside can do this can you imagine what the inside looks like?”

wrist bending the wrong way holding a mug of coffee

25. “Both taken on the same day.”

woman standing connected to monitor with wires and wearing boot, next to photo of her without any visible symptoms


 25 Pictures That Show What Ehlers-Danlos Syndrome Really Looks Like


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