I’ve spent years piecing together the puzzle of my health, and if you’re reading this, you might be doing the same.
Growing up with Ehlers-Danlos Syndrome (EDS) isn’t always obvious—many of us don’t get a diagnosis until adulthood.
The signs are often subtle, dismissed as “just being clumsy” or “overly flexible.”
But looking back, there are patterns.
Here are 23 signs you grew up with Ehlers-Danlos Syndrome, based on my own experiences and those shared by others in the EDS community.
Let’s dive in.
Table of Contents
What Is Ehlers-Danlos Syndrome, Anyway?
EDS is a group of connective tissue disorders caused by genetic defects in collagen production.
Think of collagen as the glue that holds your body together—skin, joints, blood vessels, everything.
When that glue’s faulty, things get… bendy.
There are 13 subtypes, but hypermobile EDS (hEDS) is the most common.
Symptoms vary, but joint issues, skin changes, and chronic pain are hallmarks.
Sound familiar? Let’s see if these signs resonate.
Physical Signs That Stood Out Growing Up
1. You Were the Ultimate Bendy Kid
I could twist my arms like a pretzel or do the splits without trying.
Classmates thought it was cool; my joints disagreed.
2. Joints Popped Like Firecrackers
Every step, stretch, or yawn came with a symphony of clicks and pops.
It wasn’t painful back then—just weird.
3. Bruises Appeared Out of Nowhere
I’d wake up with mystery bruises, like I’d fought a ghost in my sleep.
Fragile skin is a classic EDS trait.
4. You Were Always Spraining Something
Ankles, wrists, knees—you name it, I sprained it.
Tripping over nothing was my specialty.
5. Scars Looked Different
My cuts healed into thin, papery scars that stretched wider than expected.
Doctors call this “atrophic scarring.” I called it annoying.
6. Growing Pains Were Next-Level
Those aches everyone said were normal?
Mine felt like my bones were staging a revolt.
7. You Couldn’t Keep Up in Gym Class
Running or jumping left me winded or sore for days.
My body didn’t recover like my friends’ did.
8. Your Skin Felt Like Velvet
People always commented on my soft, stretchy skin.
It was a compliment—until I learned it was an EDS clue.
Everyday Struggles That Felt Normal (But Weren’t)
9. Holding a Pencil Hurt
By high school, writing for long periods made my fingers ache.
I thought I was just bad at note-taking.
10. You Were Always Tired
Chronic fatigue wasn’t just “teen laziness.”
My body was working overtime to hold itself together.
11. Headaches Were a Constant Companion
Migraines or tension headaches hit me regularly.
I later learned this could tie to neck instability, common in EDS.
12. You Avoided Certain Clothes
Tight jeans or heavy backpacks? Nope.
They irritated my sensitive skin or strained my joints.
13. Stomach Issues Were Your Norm
Bloating, nausea, or random food intolerances plagued me.
EDS can mess with your digestive system too.
14. You Felt Older Than Your Age
By my teens, I was creaking like a grandparent.
Joint pain made me feel decades older.
Social and Emotional Clues
15. People Called You Clumsy
I tripped over air, dropped things constantly, and bumped into walls.
It wasn’t carelessness—it was poor proprioception.
16. You Felt Like a Hypochondriac
Doctors dismissed my complaints as “growing pains” or “anxiety.”
I started doubting myself.
17. Gym Teachers Didn’t Get It
They pushed me to “tough it out” when I couldn’t keep up.
I wish they’d known about invisible illnesses.
18. You Avoided Team Sports
I wanted to play, but injuries or fatigue made it impossible.
Solo activities like swimming were my jam.
Weird Body Quirks You Didn’t Question
19. Your Joints Dislocated Easily
Popping my shoulder back in became routine.
I didn’t realize most kids couldn’t do that.
20. You Had Stretchy Eyelids or Earlobes
Pulling my skin farther than my friends’ was a party trick.
Now I know it’s a sign of hyperelasticity.
21. Dental Issues Were Common
Crowded teeth or frequent cavities? Check.
EDS can affect your oral health too.
22. You Fainted or Got Dizzy A Lot
Standing up too fast made the room spin.
This could be linked to POTS, a common EDS comorbidity.
23. Chronic Pain Crept In
By my late teens, aches were constant.
I thought everyone lived like that—spoiler: they don’t.
What to Do If This Sounds Like You
If these signs hit home, you’re not alone.
Here’s how I started navigating my EDS journey:
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Talk to a doctor: Find one familiar with connective tissue disorders.
A geneticist or rheumatologist is a good start. -
Track your symptoms: Keep a journal of pain, dislocations, or weird quirks.
It helps doctors see the big picture. -
Connect with the EDS community: Online groups like The Ehlers-Danlos Society offer support.
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Explore physical therapy: Gentle exercises can stabilize joints.
Look for PTs trained in hypermobility. -
Be kind to yourself: It’s okay to rest.
You’re not weak—you’re managing a complex condition.
FAQs About Growing Up with Ehlers-Danlos Syndrome
Q: Can you have EDS and not know it?
Absolutely. Many of us go undiagnosed for years because symptoms are brushed off as “normal.”
Q: Is hypermobility always a sign of EDS?
Not always. Some people are just bendy. But if it comes with pain or other symptoms, get it checked.
Q: How do I get tested for EDS?
A doctor will evaluate your symptoms, medical history, and may do genetic testing for certain subtypes.
The Beighton Score measures joint hypermobility.
Q: Can kids have EDS?
Yes, symptoms often start in childhood, but they’re easy to miss.
Early diagnosis can make a big difference.
Q: Does EDS get worse with age?
It varies. Some symptoms, like joint pain, may worsen, but lifestyle changes can help manage it.
Final Thoughts
Looking back, these 23 signs you grew up with Ehlers-Danlos Syndrome were my body’s way of waving a red flag.
I ignored them for years, but now I’m learning to listen.
If this list feels like your childhood, don’t brush it off.
You might just be piecing together your own EDS puzzle.