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.
These are the direct result of having defective collagen (connective tissue). I was surprised to learn that any part of our body that has a shape (not liquid) must contain some connective tissue to hold it together – even our bones.
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:
- “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.
This is only the first of the pictures in the article – the others are worth a look too.