23 Photos That Reveal How Ehlers-Danlos Syndrome Affects the Skin
Article updated August 1, 2019.
The Ehlers-Danlos syndromes are a group of rare connective tissue disorders that include 13 different subtypes. Though each subtype has its own unique diagnostic criteria and manifests in different ways, several of the most common symptoms those with EDS experience include joint hypermobility, skin hyperextensibility and tissue fragility.
As a connective tissue disorder, EDS means that collagen, one of the main proteins in connective tissue, isn’t made the typical way. Collagen normally provides elasticity to the skin, but those with Ehlers-Danlos often lack this same elasticity, leading to hyperextensible (or “stretchy”) skin that is often described as velvety and soft.
However, the abnormalities in collagen production can also make the skin more fragile, causing it to bruise or tear easily, and resulting in slow wound healing and severe scarring.
To shed some light on the reality of skin issues many EDS-ers face, we asked our Mighty community to share a photo demonstrating how Ehlers-Danlos syndrome has affected their skin. Every “zebra” may experience different skin-related symptoms, perhaps due to the type or severity of their EDS, or the effects of common comorbid conditions such as postural orthostatic tachycardia syndrome (POTS) or mast cell activation disorder (MCAD). But if you recognize your own experiences in any of the following photos, know you’re not alone.
Here’s what our community shared with us:
1. “I have hEDS, and I scar badly… this photo is various stages of my scars from central lines, and bruises from countless IV attempts. I’m a hard stick, and I bruise badly because my skin and veins are so fragile. Also a scar on a normal person fades over time, mine don’t. I have scars all over my body that are all raised like this.” – Amanda L.E.
2. “I’ve got horrid stretch marks everywhere, had them since age 11 and they just increase and get worse, pregnancy took it to a whole new level and I’m now covered…” – Pandora P.
3. “Stretch, stretch, stretchy.” – Courteney S.S.
4. “It can tear super easily – even just by taking tape off after an IV. The bruise looking thing at the top of my arm is where my IV was. The other red dots and marks are from tape pulling and ripping the skin. This is three days after the fact.” – Kourteney K.
5. “Spontaneous bruising without any reason.” – Soja M.
6. “My surgical sites heal very slow and open up and I get wide keloid scars. I wish doctors knew to keep my stitches and glue on longer.” – Maria H.
7. “I got a burn on my arm on February 17; it looked like a normal, blistered burn. The next picture is March 17, exactly one month after the burn. People with EDS have skin that doesn’t heal properly or as timely as others, and also tends to be ‘allergic’ to ‘normal’ clinical remedies. My arm reacted to everything from paper tape and gauze, to soap and water, resulting in a pretty ugly reaction that lasted about two months. Throw in two ER visits, one dermatology visit and countless checks with my PCP, and today, my arm still has a pretty prominent scar, and probably always will.” – Gauri W.
8. “I keep getting compliments on how soft and perfect my facial skin looks. Don’t mind the red, it pops up. You can also see the drooping of my upper eyelid. This happens because of the messed up collagen.” – Becky S.
9. “I bruise so easily that I can even bruise myself just from scratching absentmindedly at a bug bite.” – Jeny R.
10. “The skin on my fingers is so fragile that it just tears off in layers, this just from a day of moving things around. When the skin grows back it cuts off the capillaries under my nails which causes numbness. I wish people understood how fragile our skin is and that we need some other fix than just a cream, I also wish they would understand my numbness and the lost of feeling.” – Gillian C.
11. “Atrophic scarring.” – Shanin B.
12. “Skin tearing in places like the cheeks and neck, turning into cigarette paper scars and not healing for months. Also lots of petechiae (broken blood vessels under the skin).” – Amanda R.
13. “Bruise near knee. Same pain, no known trauma or injuries.” – Maura S.
14. “Soft skin. We’re meant to have younger looking skin, but not when you went into menopause 20 years early. I look like a lizard!” – Louise M.B.
15. “Piezogenic papules on my heels and wrists that protrude due to collagen laxity.” – Pandora P.
16. “Frequent hematoma.” – Stacy S.
17. “Scars that widen over time.” – Maria H.
18. “Thin, translucent skin.” – Courteney S.S.
19. “I don’t know what’s wrong with my knuckles. It looks like bone right under the skin. I have hEDS.” – Helen M.
20. “My port scar that is the definition of keloid scarring.” – Jenifer W.
21. “I frequently get bruises without trauma. I woke up this morning wondering what I could have possibly done to myself while sleeping.” – Brittany N.
22. “I dislocated my knuckle and because I have cEDS my skin broke open when I put it back. My skin’s fragile. It’s like tissue paper. Sometimes it rips open and other times it excessively bruises.” – Karrie A.
23. “Adhesives are a nightmare! The top photo is the aftermath of KT tape. The bottom two show bandaid reactions. Dermatitis, skin ripped off and even swelling. I’m allergic to latex and use safe Band-aids, but I still have issues.” – Courtney M.