You know that feeling when you piece together childhood memories and suddenly everything makes sense? That's what happens for many of us with Ehlers-Danlos Syndrome (EDS) when we look back. We spent years being called "clumsy" or "dramatic" without understanding why our bodies felt different. If you're wondering whether those weird childhood experiences point to EDS, let's walk through this together. I've been down this rabbit hole myself after my diagnosis at 28, and wow, the childhood flashbacks were intense.
Real talk: Doctors miss this constantly. One rheumatologist told me my hypermobility was "just loose joints" until I showed up with dislocated ribs from sneezing. The medical gaslighting is real with EDS.
The Body's Blueprint: Connective Tissue Clues
EDS isn't just about bendy joints. It's your body's glue – the connective tissue – being fundamentally different. Here's what that looked like growing up:
That Party Trick Wasn't Normal
Remember showing off by bending your thumb to your wrist? Or maybe you were the kid who could pop their shoulder blades out like wings.
- Walking on the backs of your hands during playtime
- Constantly sitting in weird contorted positions (W-sitting for hours)
- Teachers scolding you for "fidgeting" when joints just wouldn't stay put
We thought everyone could do these things. Turns out growing up with Ehlers-Danlos Syndrome meant our collagen had other plans.
| Childhood Joint Moment | Typical Kids | EDS Experience |
|---|---|---|
| Ankle sprains | 1-2 times | Monthly occurrence |
| Knee pain | After sports | Waking up pain |
| "Growing pains" | Occasional | Nightly torture |
| Joint cracking | Occasional pops | Constant Rice Krispies symphony |
My PE teacher insisted I was avoiding running because I was lazy. Nope – my ankles gave out like they were made of jelly. Wish I'd known then what I know now about signs you grew up with Ehlers-Danlos.
Skin Stories That Sound Fake
Velvet skin isn't as glamorous as it sounds when:
- Paper cuts felt like surgical incisions
- Band-Aids ripped your skin off worse than the actual injury
- You had scars that stretched and widened mysteriously
Remember that time you leaned on your elbow during class and got a bruise that lasted a month? Or when your wristwatch left dents that took hours to disappear? Classic Ehlers childhood markers.
My dermatologist was fascinated by my skin's "tissue paper" texture but never connected it to anything systemic. It took 15 years and a dislocated jaw during dental work for someone to piece it together.
The Hidden Stuff Nobody Talks About
Beyond the obvious joint and skin stuff, there's a whole underground world of EDS symptoms we normalized:
Gut Feelings That Weren't Anxiety
If you had "nervous stomach" as your permanent status:
- School nurse visits for unexplained nausea
- Being labeled "picky eater" because foods caused pain
- Constipation that made bathroom trips traumatic
Turns out growing up with Ehlers-Danlos Syndrome often means delayed gastric emptying and motility issues. Who knew?
Autonomic Mayhem
Did you:
- Nearly pass out during school assemblies?
- Get dizzy standing up from desks?
- Have inexplicable racing heart episodes?
Doctors called it "dehydration" or "growth spurts." Meanwhile, we were out here playing orthostatic tachycardia bingo.
| Common School Experience | EDS Reality |
|---|---|
| Fainting during fire drills | Blood pooling issues |
| Exercise intolerance | POTS symptoms |
| Heat sensitivity | Dysautonomia |
| Migraines on sunny days | Craniocervical instability |
I missed 32 days of fourth grade because "my head hurt too much to get up." They sent the truancy officer. Not my finest moment.
The Pain We Didn't Have Words For
Kids shouldn't chronicle pain levels, but we did:
The Mystery Aches
Remember trying to describe pain that:
- Migrated daily (knees today, wrists tomorrow)
- Felt like "bone deep" aching
- Got dismissed as "growing pains" past age 14
Pain scales were useless. How do you rate "feels like my femur is vibrating"?
Pro tip: If your pain journal sounded like a horror novel ("electric shocks in my teeth," "feeling like my spine is unzipping"), you might recognize these signs you grew up with Ehlers-Danlos Syndrome.
Fatigue That Sleep Didn't Fix
This wasn't regular tiredness. We're talking:
- Sleeping 12 hours and waking up exhausted
- Crashing for days after birthday parties
- Being told you had "mono" multiple times (but tests negative)
I once fell asleep mid-sentence during a piano lesson. My teacher thought I was being dramatic.
The Dental Disaster Zone
If your dentist knew you by name:
- Crowded teeth requiring years of braces
- Gums that bled if you looked at them funny
- TMJ issues before hitting puberty
- Enamel so soft cavities were inevitable
Collagen is in your teeth too. Who knew? Not my orthodontist, who blamed my "poor brushing habits" for gum recession.
| Dental Red Flag | EDS Link |
|---|---|
| High arched palate | Connective tissue development |
| Teeth not fitting jaws | Abnormal collagen matrix |
| Frequent root canals | Enamel defects |
| Braces for 5+ years | Poor tissue response to tension |
My dental records look like a war journal. Seven root canals before college. Fun times.
Frequently Overlooked Signs
The sneaky stuff even doctors miss:
Vision Issues Beyond 20/20
Perfect acuity doesn't mean your eyes are fine when:
- Light sensitivity made you wear sunglasses indoors
- Focus shifted randomly during reading
- Dry eyes felt like sandpaper by 3pm
Ophthalmologists never connected this to systemic issues. "Just use eyedrops," they said.
That Weird Bruise Collection
If your legs looked like a Pollock painting:
- Not knowing where bruises came from
- Bruises taking months to fade
- Developing "bruises within bruises"
My mom was questioned by social workers twice about my legs. Awkward explanations all around.
Pro tip: If you regularly made up stories about falling down stairs to explain injuries, that's a red flag. I used "clumsy dog" as my go-to excuse.
Putting It All Together
Spotting these 23 signs you grew up with Ehlers-Danlos Syndrome isn't about diagnosis (only geneticists can do that). It's about context for your body's quirks. Here's why it matters today:
Why Childhood Memories Matter Now
Those "harmless" childhood symptoms predict:
- Which joints will deteriorate first
- Your risk profile for related conditions
- How your body handles surgeries or meds
I wish I'd known about my cervical instability before that rollercoaster in 10th grade. That headache lasted three weeks.
| Childhood Symptom | Adult Health Implication |
|---|---|
| Chronic joint subluxations | Early osteoarthritis |
| Digestive issues | Gastroparesis risk |
| POTS symptoms | Autonomic dysfunction progression |
| Dental overcrowding | TMJD and sleep apnea |
Action Steps If This Feels Familiar
If reading this gives you that "oh crap" feeling:
- Track patterns: Note when symptoms flare (weather changes? hormonal cycles?)
- Find EDS-literate providers: Check the Ehlers-Danlos Society directory
- Get imaging: Baseline MRIs for trouble joints
- Start PT early: But avoid aggressive manipulation
- Join communities: Reddit's r/ehlersdanlos saved my sanity
Skip the 10-year diagnostic odyssey I endured. Demand referrals to geneticists familiar with connective tissue disorders.
Warning: Avoid chiropractors offering "adjustments." My cousin's neck manipulation caused a CSF leak. Stick with EDS-trained physical therapists who understand hypermobility.
Frequently Asked Questions
Not really. While symptoms worsen over time, the underlying collagen defect exists from conception. Many adults realize they did have signs growing up but normalized or misremembered them. That "clumsy phase" or "sensitive stomach" takes on new meaning.
Absolutely not. There are 13 EDS subtypes with different criteria. The hypermobile type (most common) requires 5/12 criteria on the Beighton scale plus chronic pain. I only hit 7 of these 23 signs definitively but still got diagnosed via genetic testing.
In the US, panel tests range from $250-$2500 depending on insurance. Invitae offers self-pay connective tissue panels for around $250. Some require clinical diagnoses first. Pro tip: Get pre-authorization in writing – I got stuck with a $1,700 bill when insurance reversed coverage.
Yes, but it's tricky. Pediatricians often dismiss symptoms as "growing pains" or "flexible joints." My nephew got diagnosed at 9 after his fourth dislocation. Key indicators: frequent injuries requiring medical care, delayed motor skills, or family history. Push for referral to pediatric rheumatology or genetics.
Weirdly, yes. You develop insane pain tolerance. You learn body awareness early. Plus, we're excellent at reading medical literature after years of self-advocacy. That said, I wouldn't wish this on anyone. The constant joint instability and fatigue wear you down.
Recognizing these 23 signs you grew up with Ehlers-Danlos Syndrome isn't about labeling. It's about finally understanding why your body behaves differently. That kid who was always in the nurse's office? They weren't faking. Knowing this stuff now changes how you manage your health moving forward. Trust me – your 40-year-old joints will thank you.
Leave a Comments