14 Photos That Show the Different Ways Ehlers-Danlos Syndrome Can Manifest
Since there are 13 subtypes of Ehlers-Danlos syndrome with symptoms that affect systems throughout your body, EDS can manifest in many different ways. Some manifestations, like joint dislocations, hypermobility, skin elasticity and chronic pain, are common among EDS warriors, while others, like gastrointestinal issues and organ rupture, may affect some but not all. EDS is also often accompanied by co-morbid conditions, like dysautonomia, adding even more variation to how EDS can manifest.
To create a guide to some of the ways EDS can present itself, we rounded up photos of 14 ways EDS can manifest, as shared by our Mighty community. We hope these photos can help show others with EDS that they aren’t alone in dealing with these symptoms, as well as educate people about the visible (and invisible) aspects of this condition.
Here’s what our community shared with us:
1. Joint Dislocations
“A lot of my joints no longer work the way they should. My right thumb is one of those joints. When I write, pick things up, hold things, grasp things, etc, my thumb slips out of place. I can’t rotate it any more, it just clicks in and out. I took this picture of my thumb because many of my doctors don’t realize just how much you use your thumb. I notice, because for me, it’s painful, and a hassle. So, I took this photo to show them that just normal, daily tasks such as opening Chapstick are hard.” — Rebekah B.
2. Postural Orthostatic Tachycardia Syndrome (POTS)
“Myself on my first port access today. My EDS manifests with POTS, and fluids is the only way for me to keep myself from passing out. I get fluids two times a week to help with this. I also manifest with major orthopedic and joint issues, but my comorbid manifestations are major, too.” — Saylor A.
3. Hyperextension of Joints
“I have kEDS and when I relax my knees hyperextend. Over the past year I’ve tried to stop doing it as it’s caused damage to my knee joints, so now I make a conscious effort every time I stand to try to stop this from happening.” — Poppy A.
4. Stretchy, Hyperelastic Skin
“My sagging skin was my biggest insecurity, amongst other side effects. I would later learn this was due to the rarity of my type. As I got older, my discrepancies started to show more and more… I hope to be an inspiration to others and open individuals’ eyes to the true beauty within themselves,” Sara Geurts told The Mighty.
5. Mast Cell Activation Disorder
“Mast cell activation disorder. This is what happens to my face when I shower, and it gets even worse when I try to cover it up. After this initial burning, red, ugly rash, the skin peels and flakes off. It’s painful, embarrassing, and I’m at my wit’s end with it. This is a mild case, a day after contact with water. It is much worse about 30 minutes after exposure.” — Jacklyn C.
6. Needing Lots of Medications
“At 33 I have converted weekly pill containers into my daily pill containers. I’ve been on Medicare since I was 26. My life is nothing but doctors appointments, pharmacy trips, intake meetings and medical supply catalogs.” — Shay K.
7. Easy Bruising
“Crappy fragile veins… this is the result of trying to get a line in for fluids and IV antibiotics for an infection last Friday.” — Aemie T.
“This is a photo of my daughter trying to make it through a photo shoot with a dance photographer. EDS and dysautonomia make her eyes extremely photosensitive and slow to adjust. On this day the sun was so bright she couldn’t keep her eyes open without intense pain.” — Avril D.
9. Brain Injury
“In the hospital after discovering I’m paralyzed from the waist down. I’ve had multiple traumatic brain injuries as my brain is extremely fragile and not held in place by connective tissue like it should be. I have a high pain tolerance so I haven’t even known or sought help for some of my TBIs but it’s thought the portion of my brain responsible for moving my legs was damaged. I also will be getting a specialized MRI soon at Cleveland Clinic to check for tethered cord as I have a cardiac pacemaker that isn’t MRI safe. I have hEDS and either vEDS or cEDS.” — Jamie H.
“Thought I’d share this X-ray because it helped lead to my diagnosis. The scoliosis was so bad my whole life, I just thought I’d be all better when it was ‘fixed’ with my second fusion surgery. Who knew all my clumsiness, and flexibility, and random bruising, and, and, and…were all connected? A blessing and a curse. Having validation and an explanation, but having to accept my limitations.” — Staci H.
11. Mental Health Challenges
“If that looks like a fake smile, it’s only half fake. This is me celebrating my 30th birthday with my best friends. Hours later, I was sobbing. No one really prepares you for the mental symptoms of EDS. Some days you fake it until you make it, or until you cry it all out. You never know what will be the catalyst for asking for help, but fake as this photo looks, I’m proud that day got me to where I am now.” — Gauri W.
12. Frequent Falling/”Clumsiness”
“This is an asphalt burn from where I face-planted in a parking lot from just walking. EDS and POTS make me so clumsy. I have zero balance because I’m in too much pain most days to walk, so when I do walk, I wobble and fall a lot. it sucks. Still recovering from my fall four days later.” — Emily F.
13. Chronic Pain
“I was in Seattle, walking around all morning (January 1st). You can’t see how much pain I was in, which is what sucks about having an invisible illness. My hip was coming out, my knee was coming out, and my shoulder was aching, but I stopped to admire the beauty of my city.” — Michelle D.
“Here’s me having just tried on about 60 wedding dresses and finally picking my dress. Inside I am screaming in pain and exhaustion but still a fantastic day.” — Kirstie W.