Photos: EDS

There aren’t a huge amount of photographs of people with Hypermobile Ehers-Danlos Syndrome online and the ones that do exist tend to show very severe forms of the disease which I don’t relate to.  So here are some pictures from my various blog posts to show what more typical hEDS looks like.

SKIN:

Photo of stretchy elbow skin

Stretchy elbow skin

photo of stretchy hand skin

Stretchy hand skin

Photo of stretchy neck skin

Stretchy neck skin

Photo of visible eye veins

Thin Sclera through which capillaries are visible

Photo of thin skin and visible veins

Thin skin through which veins are visible

Photo of Elephant Knuckles

Loose, saggy skin

photo of scratching

Skin which tears easily (this was caused by scratching an itch)

Thickened skin

Widened, atrophic, cigarette paper scar

HYPERMOBILITY:

Photo of hypermobile finger

Hypermobile finger

Hypermobile toe joint

Photo of hypermobile thumb

Hypermobile thumb

Hypermobile elbow and wrist

Photo of backwards prayer

Hypermobile shoulders

Photo of hypermobile toe joint

Hypermobile toe joint

Photo of flying hand sign

Hypermobile hand

Photo of hypermobile elbows

Hypermobile elbows

Photo of hypermobile middle finger

Hypermobile finger

Photo of hypermobile jaw

Hypermobile jaw

Photo of Gorlin's sign

Hypermobile ligament

Photo of hypermobile eyebrow

Other hypermobile odities!

MISCELLANEOUS:

Easy bruising – I have no clue how I got any of these!

Photo of high foot archPhoto of collapsed foot arch

High foot arch (left) which collapses due to weak ligaments to cause flat feet when standing (right)

photo of weight-bearing hypermobile ankle

Rolled ankle from collapsing foot arch

Photo of a bunion

Bunion (not specific to EDS but common from foot rolling)

Photo of piezogenic papules

Piezogenic foot papules

 

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14 thoughts on “Photos: EDS

  1. Graham Exelby

    Hi, I am a physician in Australia working in POTS and similar areas, and have been very impressed by your blogs. I see quite a few EDS with POTS, and have found some very interesting things that may assist you- ALL have a vascular compression syndrome, either popliteal, thoracic outlet or pelvic congestion. If you read my thoughts on managing POTS on my website Dysautonomia.com.au, and it seems to apply to you, please feel free to contact me and I can walk you through how to pursue these.

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  2. KJT

    Thanks for this post. I’ve pointed it to several folks when trying to get them to understand hEDS. Hell, I’m sure that today, one of the major reasons most hEDSers remain undiagnosed is that the Wikipedia article shows only the more extreme forms–people still think you have to have the circus freak level hypermobility. When it’s stuff like this that ought to be there as the first impression!

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  3. melody

    Yes, these photos are amazing. I always dismissed my hypermobility, but your blog and pictures make me increasingly really think about EDS. I was certain I didn’t have it. I thought I must have hypermobility spectrum disorder, MCAD, and multiple chemical sensitivity. Now, realizing that I’m about as hypermobile and my skin is as stretchy as your photos stuns me. I don’t seem to bruise that easily, though. Maybe I should get tested as this seems it could be a real possibility. :-O

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    1. Jak Post author

      I was initially diagnosed with HSD Melody (called HMS then) because my skin wasn’t overtly stretchy and I’d never dislocated a joint. But then in my forties my symptoms deteriorated and I started subluxing regularly. Along with my history of childhood spinal surgery, dental overcrowding, gut issues etc. my diagnosis was changed to hEDS. For me it was important to see a doctor knowledgeable in EDS and not just a general Rheumatologist. Many of my hypermobile joints aren’t the ones specifically mentioned in the Beighton score (for example my thumbs bend the ‘wrong’ way) yet she still scored them. She also ordered a heart scan (which found a murmur I didn’t know I had but no valve prolapse) and told me I had blue sclera that no-one had noticed before. Jak x

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      1. melody

        Interesting. I haven’t dislocated joints much, I don’t think. My elbows aren’t hypermobile, my fingers and especially knees are. I was the envy of my yoga classes. I used to tell people I don’t have bones, just cartilage. But as a child I also had a heart murmur that later disappeared–sometime when I was a teenager, I think. Hmm, in my 40s, when I developed serious MCS and asthma symptoms, I first went to a chiropractor because of constantly pulling ribs out and pinching nerves. It hurt every time I took an asthmatic breath. I didn’t know what hit me, all these overwhelming physical problems. Desperate, I learned how to often put the ribs back myself from doing yoga, which I think kept me from being incapacitated, but I’m not doing it much now. 😛 (I need to try to start doing it at a gentler pace again.)
        I will look into a doctor knowledgeable about EDS. Thanks for everything you’ve said, Jak!

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  4. katherine sanderlin

    Sooo…I just recently learned about EDS and was unsure where I fit in, but it explained so much of my life experience that I started diving more deeply. And even though my 23 and Me raw data showed the appropriate areas of trouble and I can go down the diagnostic criteria and check a lot of it off…but kept convincing myself it was not REALLY what was going on. And then I saw these pictures. Every. Single. One. (Except the bunions.) And then, having never really looked at my feet before too closely, I saw the piezogenic papules. Like little clusters of grapes, or glops of cottage cheese. And the ARCH thing. Every picture. It is like they are of my own body. Thank you. Thank you. Thank you. I now feel I can share with my new doctor (just moved cross-country) and maybe truly start to understand myself better.

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    1. Jak Post author

      Hi Katherine

      So pleased you found my photos useful, though sorry to hear you may be a zebra. The images we see of EDS on Google are extreme, and that’s not how the disease presents in the majority of patients.

      Hope your new doctor is helpful.
      Jak x

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  5. jess1mey

    I am SO HAPPY I just found your blog! I was 90% sure I have hEDS but was a touch unsure because I didn’t match the extreme pics you see on google. But after seeing your pictures and reading about your experience, I’m 99.9% sure. I’m seeing my primary care doc tomorrow to start the process and I’m so nervous about having my complaints swept under the rug (again). My whole life I’ve been complaining of practically everything related to EDS but have always been written off by doctors. Thank you for putting the idea out there of finding a Rheumatologist familiar with EDS. Now that I have more knowledge and more resources, I feel like I can take a more proactive and assertive approach with my care now.

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    1. Jak Post author

      Thanks so much for the comment 🙂 Helping just one person makes all the hard work worthwhile. I know with my MCAD I’d been told for a decade it wasn’t possible to react to all drugs and I was just an anxious person having a panic attack – the validation when I finally got my diagnosis was MASSIVE and has made such a difference to my care and the way I am treated. Good luck and let me know how you get on. Jak x

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  6. Amelia

    Wow. These pictures look so much like me! I’ve been thinking that I might have EDS for a while now but my symptoms are relatively mild (except for really bad pain in my wrists that I have anytime I do too much with my hands). Like others have said, all the pictures I found before this post were (much) more extreme than me, so I thought I couldn’t possibly have EDS – even though it explains all the problems/symptoms that I have. Plus, my mother has very similar (more severe) symptoms and according to her, my grandmother did as well…

    Now I feel a bit more confident and I might even feel brave enough to mention it to my family doctor (once I finally find a new one since I moved a while ago). I don’t really have any idea where else to start in order to get a diagnosis…

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    1. Jak Post author

      Glad you’ve found my photos helpful Amelia 🙂 The criteria for hEDS were tightened in 2017 so it’s now fairly hard to be diagnosed, however many people are now falling under the Hypermobility Spectrum Disorder bracket so you still end up with a helpful diagnosis.

      My own GP had never heard of EDS, but there is a new and excellent toolkit for GPs online if your GP needs some guidance https://www.rcgp.org.uk/clinical-and-research/resources/toolkits/ehlers-danlos-syndromes-toolkit.aspx

      He/she should refer you to a rheumatologist if EDS is suspected.

      Jak x

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  7. Holly

    I have all the findings you have. I have SVT a heart rate caused only by positioning bend and twist it feels like my aorta gets compressed or a rib is hypermobile. I believe I have POTS and hEDS and now histamine issues which I think may be tied to mast cell. I also have eosinophils in my gut and I believe this ties to my other autoimmune diagnoses. Please help. Anyway I can find someone to diagnosis this. Thank you.

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