23 Signs You Grew Up With Ehlers-Danlos Syndrome (Not Just Clumsy)

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23 Signs You Grew Up With Ehlers-Danlos Syndrome (Not Just Clumsy)

If you spent your childhood being told you were just clumsy, overly flexible, or suffering from severe growing pains, you are not alone. Many adults with Ehlers-Danlos Syndrome (EDS) spend decades looking for answers to an endless list of childhood quirks and injuries.

EDS is a group of genetic disorders that affect your connective tissue—specifically, how your body produces collagen. Because collagen exists almost everywhere in your body, the signs of EDS show up long before adulthood. Translating these childhood memories into clinical medical terms is often the first step toward getting a real diagnosis.

Disclaimer: This article is for informational purposes only and does not constitute medical advice. If you suspect you have EDS, consult a primary care physician, rheumatologist, or geneticist for an official evaluation.

Ehlers-Danlos Syndrome (EDS) childhood signs often include extreme joint hypermobility, easy bruising, chronic “growing pains,” and frequent joint subluxations. Because EDS is a genetic connective tissue disorder affecting collagen, early symptoms show up across multiple body systems, leading many children to be mistakenly labeled as simply clumsy or double-jointed.

Key Takeaways

Joint hypermobility and “party tricks” are primary hallmarks of EDS, not just harmless quirks.
Childhood clumsiness is often a clinical mix of joint instability and poor proprioception (body awareness).
EDS affects collagen, meaning symptoms appear across the skin, joints, stomach, and nervous system.
Atrophic, crinkly scars on the knees and forehead from normal falls point to tissue fragility.
You can speed up a medical diagnosis by translating your childhood experiences into the exact clinical terms doctors use.

Quick Start: What Actually is EDS?

Ehlers-Danlos Syndrome is a genetic connective tissue disorder. Think of connective tissue as the glue that supports your skin, joints, blood vessels, and organs. In people with EDS, this glue is faulty or weak. There are 13 recognized subtypes of EDS, with Hypermobile EDS (hEDS) and Classical EDS (cEDS) being the most common.

Why Childhood EDS is Often Missed (The “Fragmented Care” Problem)

Diagnosis often takes years because of how modern medicine is structured. Doctors usually specialize in one specific area of the body.

A child with an underlying collagen defect will likely see a gastroenterologist for chronic stomach pain, an orthopedist for repeated ankle sprains, and a neurologist for dizzy spells. Each specialist treats the individual symptom in front of them. It is very rare for one doctor to zoom out and connect the stomach, joints, and nervous system to a single genetic source.

This “fragmented care” means the root cause goes unnoticed. Patients are left believing they just have a lot of bad luck or unrelated health issues. Learning the full scope of the condition through resources like the NIH GeneReviews overview of EDS can help you connect these dots for your healthcare team.

23 Signs You Grew Up With Ehlers-Danlos Syndrome

The Joint & Muscle Quirks (Signs 1–8)

The most visible childhood signs of EDS happen in the joints. Faulty collagen creates loose ligaments, meaning the joints lack the necessary tension to stay firmly in place.

1. The classic “party tricks”

Joint hypermobility is often recognized in childhood as being “double-jointed.” If you could routinely bend your thumb forward until it touched your forearm, or bend your pinky finger backward past 90 degrees, you were demonstrating a primary clinical hallmark of EDS.

2. Palms flat on the floor

Another common childhood trick is bending over to touch your toes. If you could easily place both palms completely flat on the floor without bending your knees, mention this to your doctor. It directly satisfies one of the requirements on the clinical Beighton scale, which doctors use to measure joint flexibility.

3. Being labeled a “clumsy”

kid Did you constantly run into doorframes or trip over your own feet? Clumsiness in EDS is actually a combination of two clinical issues: poor proprioception (your brain struggling to sense exactly where your limbs are in space) and underlying joint instability.

Common Mistake: Dismissing frequent childhood tripping as “just not paying attention.” In hypermobile children, loose joints disrupt the feedback signals sent to the brain, directly causing poor coordination.

4. Severe and relentless “growing pains

Chronic musculoskeletal pain in the joints or limbs is widely reported in children with EDS. Unfortunately, doctors and parents frequently dismiss this as normal growing pains. If your leg or joint pain was severe, kept you awake at night, and never really seemed to stop as you got older, it may have been connective tissue pain.

5. The “lazy” toddler phase

Some children with EDS experience mild muscle hypotonia, which means decreased muscle tone. In infancy and the toddler years, this can lead to delayed gross motor milestones like crawling or walking. Parents sometimes remember these children as simply being “lazy” or refusing to walk long distances.

6. Praised for “natural” athletic flexibility

A typical scenario involves a child who excels in gymnastics, ballet, or swimming because of extreme flexibility. However, this praise is usually paired with a high injury rate. These children often suffer from frequent sprained ankles, joint clicking, and severe pain after practice because their joints are moving past safe limits.

7. Frequent joint popping and clicking

While some joint popping is normal, hypermobile joints often click, pop, or snap loudly with basic everyday movements. This happens because tendons and ligaments are snapping over the bone structure due to a lack of tight support.

8. Shoulders or kneecaps “giving out”

Frequent joint subluxations (partial dislocations) or full dislocations are incredibly common. Many adults with EDS remember their kneecaps sliding out of place when running, or their shoulders slipping slightly out of socket when carrying a heavy backpack.

The Skin & Tissue Clues (Signs 9–14)

Because collagen makes up a massive percentage of your skin, children with EDS often have noticeable dermatological quirks. These signs are frequently brushed off as normal childhood scrapes and bumps.

9. Constant, unexplained bruising

Easy and frequent bruising is a common clinical finding in childhood EDS. You might have constantly had bruised legs or arms without any memory of hitting them, or developed dark bruises from very minor trauma.

10. “Cigarette-paper” scars

Take a look at the scars on your knees, elbows, or forehead from normal childhood falls. If they stretched out as they healed, becoming thin, wide, and crinkly—what doctors clinically call “atrophic” scars—this points to tissue fragility.

Expert Note: “Skin fragility and abnormal wound healing frequently result in widened, thin, ‘atrophic’ scars.” (NIH GeneReviews, 2024)
Pro Tip: Look for that exact “cigarette-paper” texture. It is a highly specific, documented sign of tissue fragility that doctors look for.

11. Unusually stretchy skin

Skin hyperextensibility is a core diagnostic criterion for Classical and Hypermobile EDS. This means the skin stretches further away from the body than normal and snaps back immediately. Children often do this with the skin on their neck or forearms as a party trick.

12. Velvety or “doughy” skin texture

Many people with EDS have an unusually soft skin texture. While people might have complimented your “soft skin” growing up, this velvety or doughy texture is actually a recognized minor clinical criterion for multiple EDS subtypes.

13. Bumps on your heels when standing

Piezogenic papules are small, non-painful herniations of fat that pop out on the sides of the heels when you put weight on your feet. They usually disappear when you sit down. These are a minor diagnostic criterion for Hypermobile EDS.

14. Minor cuts taking forever to heal

Because the connective tissue lacks normal strength, minor scrapes or cuts often take significantly longer to heal. You might have noticed that your childhood scabs easily tore open or took weeks to fully close compared to your siblings or friends.

The Systemic & Unseen Symptoms (Signs 15–23)

EDS is a systemic condition. Faulty connective tissue impacts the blood vessels, organs, and nervous system, leading to symptoms that seem entirely unrelated to joint flexibility.

15. Debilitating, heavy fatigue

Persistent fatigue that interferes with school, sports, or social activities is a heavily reported symptom in pediatric hypermobility syndromes. This is not normal teenage tiredness; it is a deep, heavy exhaustion that sleep rarely fixes.

16. Chronic “nervous stomach” or GI pain

Functional gastrointestinal issues, including chronic abdominal pain and delayed gastric emptying, are highly prevalent in youth with EDS.

Pro Tip: Don’t dismiss your childhood stomach issues as just “a sensitive stomach.” Functional GI problems are recognized medical comorbidities of hypermobility syndromes.

17. Dizziness when standing up fast

Many children with EDS experience comorbid dysautonomia, particularly postural orthostatic tachycardia syndrome (POTS). This causes extreme dizziness, blurred vision, or an abnormally fast heart rate simply from standing up.

Typical scenario example: A teenager presents with chronic, unexplained stomach pain and frequent dizzy spells upon standing. Because these issues take priority, their underlying joint hypermobility is completely overlooked by specialists until adulthood.

18. High, narrow palate and dental crowding

Connective tissue defects affect the shape of the mouth. A high, narrow palate and severe dental crowding are frequently observed oral manifestations associated with EDS. Many children require extensive orthodontic work.

19. Fragile gums

Along with a narrow palate, you may have experienced fragile gums that bled easily during routine dental cleanings or regular brushing, even with good dental hygiene.

20. Bladder dysfunction

Urinary incontinence or sudden bladder urgency is a recognized comorbidity. A significant portion of children with joint hypermobility experience bladder control issues long past the normal potty-training years.

21. Severe childhood constipation

Because the tissues of the digestive tract are highly elastic, they can struggle to push food and waste through efficiently. Chronic, painful constipation is incredibly common in children with EDS.

22. “Physical” anxiety symptoms

Because EDS often overlaps with dysautonomia (a dysfunction of the autonomic nervous system), children frequently experience physical symptoms of anxiety—like a racing heart, sweating, or shaking—even when they are not mentally anxious.

23. Frequent clumsiness leading to sprains

Rounding out the list is the end result of poor joint stability and poor spatial awareness: constant sprains. If you lived in ankle braces, knee sleeves, or ACE bandages during childhood, your joints were likely failing to support your movements.

[Mid-Article Summary: The Collagen Connection]

Why does EDS affect so many different body parts? The answer is collagen.
Collagen is the primary structural protein in the human body.
It supports your skin (causing stretchiness and easy bruising), your joints (causing dislocations), and your blood vessels and organs (causing dizziness and stomach pain).
Because the root issue is microscopic, the physical symptoms are widespread.

Childhood Quirk vs. Clinical Term (Doctor Translation Table)

When talking to a doctor, how you describe your past matters. Translating your childhood anecdotes into clinical terminology helps doctors recognize the pattern immediately.

Pro Tip: Replace vague phrases with clinical terms when speaking to a rheumatologist.

What You Say (Childhood Quirk)	The Clinical Term to Use
“I was always double-jointed.”	“I have a history of joint hypermobility.”
“I was a really clumsy kid.”	“I experienced frequent joint subluxations and poor proprioception.”
“I had terrible growing pains.”	“I suffered from chronic musculoskeletal pain in my joints.”
“My skin scars really easily.”	“I develop atrophic, cigarette-paper scars from minor trauma.”
“I always got dizzy standing up.”	“I have a history of orthostatic intolerance and dizziness.”

How to Talk to a US Primary Care Doctor About EDS

Securing an official diagnosis in the United States requires patience and the right referrals. Most primary care physicians (PCPs) are not trained to diagnose Ehlers-Danlos Syndrome. Their job is to refer you to the correct specialist.

When you see your PCP, bring a printed list of your symptoms categorized by body system. Ask directly for a referral to a geneticist or a rheumatologist familiar with connective tissue disorders. Be aware that wait times for geneticists in the US can stretch from six months to over a year. You can also search for local specialists using the Ehlers-Danlos Society Provider Directory.

System-by-System Symptom Checklist (To Bring to Your Doctor)

Use this scannable checklist to organize your medical history before your appointment:

Joints & Muscles: History of subluxations/dislocations, severe “growing pains,” extreme flexibility, frequent sprains.
Skin & Tissue: Easy bruising, stretchy skin, velvety texture, atrophic (wide/thin) scars, piezogenic papules on heels.
Gastrointestinal: Chronic stomach pain, severe childhood constipation, delayed emptying.
Nervous System & Vitals: Dizziness upon standing, racing heart, chronic heavy fatigue, poor coordination/proprioception.

Next Steps and Summary

Growing up with Ehlers-Danlos Syndrome often means spending years feeling misunderstood by doctors, coaches, and even family members. Recognizing that your childhood “party tricks,” wide scars, and chronic stomach issues are actually connected medical symptoms is incredibly validating. By translating your childhood experiences into clinical criteria, you can finally advocate for the care you need.

What to do next:

Stop the party tricks: Immediately stop hyperextending your joints to show off your flexibility; it causes micro-trauma and speeds up joint degradation.
Organize your history: Write down every childhood symptom using the translation table above to clearly demonstrate a lifelong pattern.
Find a specialist: Ask your primary care doctor for a referral to a rheumatologist or geneticist to begin the evaluation process.

FAQs

What is the life expectancy of someone with Ehlers-Danlos syndrome?

For the most common types, like Hypermobile EDS (hEDS) and Classical EDS (cEDS), life expectancy is generally normal. However, Vascular EDS (vEDS), a much rarer subtype, carries risks of organ or blood vessel rupture that can impact life expectancy.

Can you develop EDS later in life, or are you born with it?

You are born with it. EDS is a genetic disorder. While you cannot develop it later in life, symptoms often worsen, accumulate, or become more painful over time, which is why many people are not diagnosed until adulthood.

What is the Beighton score test for hypermobility?

The Beighton score is a simple clinical test measuring joint hypermobility on a 9-point scale. It checks the flexibility of the pinky fingers, thumbs, elbows, knees, and spine (touching the floor with flat hands).

Is hypermobility the same as Ehlers-Danlos Syndrome?

No. Many people have generalized joint hypermobility without pain or systemic issues. EDS is diagnosed when hypermobility is accompanied by tissue fragility, chronic pain, and systemic issues affecting organs, skin, and the nervous system.

Why does it take so long to get an EDS diagnosis?

Because EDS symptoms affect so many different body systems (joints, skin, digestion, heart rate), patients usually see multiple separate specialists who treat individual symptoms without recognizing the underlying systemic connective tissue disorder.

What kind of doctor diagnoses EDS in the US?

Typically, a medical geneticist or a rheumatologist diagnoses EDS. Geneticists can order blood panels to identify the specific genetic markers for rarer subtypes, while rheumatologists often diagnose the hypermobile subtype clinically.

Are “growing pains” always a sign of a hypermobility syndrome?

No. Occasional growing pains are common in childhood. However, if the pain is severe, constant, interferes with daily activities, or persists past puberty, it may be a sign of a musculoskeletal issue like EDS.

Can EDS be cured?

There is no cure for Ehlers-Danlos Syndrome because it is a genetic disorder. Treatment focuses on managing symptoms through physical therapy to strengthen muscles around loose joints, pain management, and treating specific comorbidities like POTS or GI issues.