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:

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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6 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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