23 Signs You Grew Up With Ehlers-Danlos Syndrome

Growing up with Ehlers-Danlos Syndrome (EDS) can feel like living in a body that doesn’t follow the usual rulebook. If you were the “bendy” kid, the one who always had random injuries, or if doctors kept scratching their heads at your symptoms, this list might feel oddly familiar. 

Here are 23 signs you probably grew up with EDS; whether you knew it or not. 

But First… What Is EDS? 

Ehlers-Danlos Syndrome is a group of inherited disorders that affects your body’s connective tissue; basically the glue that holds your joints, skin, blood vessels, and organs together. 

When your body makes flimsy glue, things get stretchy, fragile, and easily injured. That’s EDS in a (somewhat flexible) nutshell. 

Do You Know? 

EDS is often called an “invisible illness” because many signs aren’t visible until something goes terribly wrong. 

23 Signs You May Have Grown Up With EDS 

Here’s what many people with EDS recognize in retrospect: symptoms that were often overlooked or misunderstood in childhood and adolescence. 

1. You were that flexible kid in class 

Touching your toes? Too easy. You could touch your head to your knees, do full backbends, and twist your fingers in ways that freaked out your cousins at family functions. 

Fun Fact: This is called “Beighton score” flexibility; and it’s used to help diagnose EDS! 

2. Your joints popped more than popcorn 

Knees, shoulders, elbows, even your neck; clicking and popping all the time. Sometimes it hurt, sometimes it didn’t, but it always made people turn their heads. 

Fun Fact: Connective tissue disorders like EDS can cause early-onset joint degeneration. 

3. Injuries for no solid reason 

You’d be walking normally, and suddenly; ankle twisted. Or your wrist would just start hurting after brushing your hair. Friends played football; you were nursing a sprain from picking up your schoolbag. 

4. Bruises just showed up out of nowhere 

No clue where they came from. Your legs looked like someone painted them with purple stamps. Every fall left a mark that stayed way too long. 

5. You Were Weirdly Sensitive… to Everything 

Loud sounds, bright lights, scratchy tags, strong smells; sensory overload was real. Many people with EDS have a hyper-sensitive nervous system. 

6. Doctors kept shrugging 

“You’re just clumsy,” 
“Try yoga,” 
“Nothing is wrong in the X-ray,” 
“Pain? At your age?” 

You probably started thinking you were imagining it. 

7. “Fatigue” felt like a real thing; not laziness 

Even as a kid, you got tired faster. Long walks, busy school days, or family weddings would leave you completely drained. You needed rest when others were ready for round two. 

Also Read: Wellness Extract Launches Hydrogen Tablets to Combat Fatigue! 

8. You had multiple 'growing pains' — that didn’t go away 

You were told it’s just age or growth spurts. But the dull, aching pain in your legs, hips, or back just lingered... and sometimes got worse with age. 

9. Hypermobile fingers = handwriting problems 

Your grip would get tired quickly. Pens fell from your hand often, and your handwriting looked like it belonged to five different people in one paragraph. 

10. Shoes never fit “just right” 

Flat feet, weird arches, or pain with every new pair of shoes. You dreaded shoe shopping. And sports shoes? Forget it; blisters and soreness every time. 

11. You were always “the slow healer” 

Others would bounce back in days. You? Weeks. A simple cut took forever to scab over. Stitches? Scars? They stuck around longer than school memories. 

12. Dental and jaw issues 

Frequent cavities, fragile gums, or temporomandibular joint (TMJ) problems may have been present early on. 

Also Read: The Complete Timeline: What When to Eat After a Tooth Filling 

13. Stretchy skin was your party trick 

Pulling your cheek way out, bending your thumb backwards: you thought it was cool. So did your cousins. Turns out, it was EDS doing its thing. 

14. You lived on pain balms and heating pads 

Even as a teenager. While others had perfumes and deodorants in their bags, you had Volini or Moov tucked somewhere. Instant relief kit. 

15. Crowds and heat made everything worse 

Long queues? Shopping malls? Sunny days? The pain and fatigue doubled. You learned to plan your outings like a mini war strategy. 

16. “Posture” was a full-time struggle 

Sit straight? Your body would slouch naturally. Teachers thought you were lazy. You just couldn’t hold positions for long; your muscles weren’t doing the job they were supposed to. 

Also Read: Maximizing Muscle Health: The Role of Geranylgeraniol for Muscle Function 

17. Stomach issues were always “mild” but constant 

Bloating, gas, nausea, odd digestion; you were always a little off. But never sick enough to get real treatment. “It would be acidity,” people said. It was actually EDS-related GI trouble. 

Also Read: Is Your Gut Unhealthy? 10 Symptoms to Watch for And How to Heal  

18. No one took your pain seriously 

“You’re too young to be in pain.” 
“You just need to be active.” 
“Why are you acting like a 60-year-old?” 

Heard that a lot? Join the club. 

 19. Sudden “flare-ups” were your normal 

Some days were fine, other days you’d wake up like you were hit by a truck. No warning. No reason. Just… random. 

20. Medical tests were mostly ‘normal’ 

You finally convinced someone to do tests: blood, MRI, everything. And what did you get? “Reports are normal.” Meanwhile, you’re crying at night from joint pain. 

Also Read: Astaxanthin and Joint Pain Relief: Harnessing Nature's Secret for Healthier Joints  

21. You stopped talking about it after a point 

Because you were tired of explaining, tired of not being believed, and tired of people acting like you were making excuses. So you smiled through it. That smile took strength. 

22. You got used to being “different” 

The extra care, the careful movements, the fear of getting hurt; it all became part of how you live. You learned to be alert, cautious, and quietly brave.