Navigating Ehlers-Danlos Syndrome and Its Mark on the Skin
- Antonia Kenny
- 7 days ago
- 4 min read
Ehlers-Danlos Syndrome (EDS) is like that uninvited guest who doesn’t just crash the party—oh no, it rearranges your collagen, wrecks your ability to heal like a normal person, and leaves you with scars that are somehow more dramatic than the event that caused them. And unlike that one house guest who just overstays their welcome, EDS is here for the long haul. Among its many unpredictable quirks, scarring is one of the most frustrating—and diagnostically revealing—features.
So let’s talk about scars. Specifically, why yours might look like someone tried to fold your skin like origami and then gave up halfway through.
What Is EDS, and Why Does It Mess with Your Skin?
Ehlers-Danlos Syndromes are a group of genetic disorders that mess with your connective tissue—basically the biological duct tape that holds you together. In EDS, the collagen—the main protein in connective tissue—is either faulty or poorly produced, resulting in:
Joint hypermobility (yep, bendy limbs and surprise dislocations!)
Skin hyperextensibility (stretchier than a sourdough starter in July)
Tissue fragility (aka, why that tiny bump turned into a scar worthy of a war story)
The most relevant subtypes here are:
Classical EDS (cEDS) — known for soft, fragile skin and atrophic “cigarette-paper” scars
Hypermobile EDS (hEDS) — where scarring is more variable, but still frustrating
Vascular EDS (vEDS) — more serious, often involving fragile blood vessels and internal risks
The Science Behind the Scars, Faulty Collagen = Weak Construction
Normally, your body responds to injury by doing the biological equivalent of calling in a crisis team: clean up, rebuild, reinforce. But in EDS, it’s like the builders showed up drunk, forgot their tools, and left you with a scar made of soggy tissue paper.
Here’s what goes wrong:
Collagen is either poorly organized or produced in insufficient quantities—especially type V collagen in cEDS, due to mutations in the COL5A1 or COL5A2 genes.
The healing process gets stuck, especially in the remodelling phase, so the scar ends up thin, wide, or stretched.
Result? Scars that look worse than the original injury, heal slowly, and stretch over time.
Types of Scars You’ll Likely Recognize (and Curse)
Atrophic Scars
These are flat, depressed scars that look like they’ve been ironed into your skin. Common in cEDS. (EDS Clinic on Skin)
Cigarette-paper Scars
Wrinkled, fragile, and shiny—think of skin that’s had one too many bad breakups and shows it. These usually show up on knees, elbows, or anywhere that moves too much.
Papyraceous Scars
Thin, fragile scars that can tear again easily. Like writing your life story on tracing paper and then spilling tea on it.
Scarring in Medical Contexts: Why It Matters
Let’s say you go in for a minor surgery. You get stitches. But your skin acts like it didn’t read the memo.
Wound dehiscence (the wound reopens after closure) is more common in people with EDS.
Internal sutures can fail, and scars stretch out over time.
Surgeons often use reinforcement stitches, tension-reducing techniques, and longer healing times—if they know what they’re dealing with. (Source – Journal of Wound Care)
And yet, people with EDS are often dismissed with a wave of the hand and a “some people just scar easily.” Spoiler alert: that’s not good enough.
More Than Skin Deep: The Emotional Side of Scarring
Scars from EDS don’t just mar the skin—they mess with your head:
They make an invisible illness visible, often in jarring, unpredictable ways.
They become a chronicle of medical trauma, especially when surgeries go wrong or stitches don’t hold.
They affect body image in subtle ways: you find yourself explaining things that shouldn’t need explaining. “Yes, that scar? Paper cut. Yes, really. I know.”
If you’ve ever had to plan your wardrobe around “which scar will lead to fewer questions today?”, you know what I mean.
Scar Care (for Skin That Laughs at Healing Norms)
Silicone Gels and Sheets
Widely used to reduce hypertrophic and keloid scarring. These create a moist healing environment and modulate fibroblast activity.Read more via PMC
Hydration and Massage
Products with Centella Asiatica (aka cica), rosehip oil, or vitamin E can help soften scar tissue—once the wound is fully closed.
Hydrocolloid Dressings
Great during healing. They promote moisture balance and can reduce tension on the wound.
Sun Protection
Yes, your scars can tan too—and that makes them permanent. Use SPF on all scars, old and new.
Specialist Input
If you're considering surgery, see a specialist who understands EDS. Proper surgical planning is key to avoiding preventable complications. (Pro tip: Always ask if your surgeon is familiar with connective tissue disorders. If they hesitate, run.)
A Note on Diagnosis and Medical Gaslighting
If your scars look like this (widened, papery, prone to reopening) consistently, and you also have:
Joint hypermobility
Skin that bruises or tears easily
Long or unpredictable wound healing
...you might want to revisit your EDS diagnosis or ask your GP for a clinical genetics referral.
EDS is underdiagnosed, and scarring is a major diagnostic clue—especially in cEDS.
Final Thoughts: These Scars Are Yours
Scars aren’t just reminders of what happened. With EDS, they often reflect what keeps happening—a body that tries, over and over again, to heal with tools that just weren’t built right. That’s not weakness. That’s survival with flair.
So the next time someone asks, “What happened to your hand?”—you can smile sweetly and say,“Oh, that? I survived my own biology. And it looks damn good on me.”
Further Reading & Resources
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