What Is Ehlers-Danlos Syndrome (EDS)?

Ehlers-Danlos Syndrome (EDS) refers to a group of hereditary connective tissue disorders that affect the body’s ability to produce strong and stable collagen—a protein that plays a key role in the structure of skin, joints, blood vessels, and internal organs. Since collagen is present throughout the body, symptoms of EDS can appear in multiple systems, making the disorder both multisystemic and often misunderstood.

While there are 13 identified subtypes of Ehlers-Danlos Syndrome, the most common is hypermobile EDS (hEDS). Others include Classical, Vascular, Kyphoscoliotic, Arthrochalasia, and Dermatosparaxis types, each with varying levels of severity and genetic markers. Not all types have a genetic test available, which makes clinical diagnosis crucial—especially in childhood.

🧬 Quick Facts About Ehlers-Danlos Syndrome

EDS symptoms often begin in childhood, but many children are misdiagnosed or dismissed as simply being “clumsy,” “lazy,” or “dramatic.” As a result, many people don’t realize they grew up with Ehlers-Danlos Syndrome until adulthood—leading them to search for signs they missed early in life.

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🚸 Why Childhood Symptoms of EDS Are Overlooked

• Symptoms mimic common childhood complaints: Pain, fatigue, or tummy troubles are often chalked up to growing pains or anxiety.

• Lack of awareness in pediatric care: Many pediatricians are not trained to recognize subtle signs of connective tissue disorders.

• Symptoms vary greatly: One child might struggle with hypermobility while another has severe digestive issues, leading to fragmented diagnosis.

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🧠 EDS Affects the Whole Body—Even as a Child

Growing up with Ehlers-Danlos Syndrome is not just about being hypermobile. It’s a whole-body experience that may include:

• Musculoskeletal instability

• Skin fragility and delayed healing

• Gastrointestinal distress

• Poor proprioception and motor coordination

• Chronic fatigue

• Dysautonomia (e.g., POTS)

These experiences are often internalized or dismissed until much later in life. That’s why recognizing the 23 signs you grew up with Ehlers-Danlos Syndrome is so important—because it offers validation, clarity, and the potential for proper diagnosis.

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💡 Why Recognizing the 23 Signs You Grew Up with Ehlers-Danlos Syndrome Matters

Understanding these signs is more than just satisfying curiosity. It can:

• Help you seek proper care: Many adults with undiagnosed EDS struggle without treatment. Recognizing early signs can help confirm the diagnosis.

• Aid your children or family: EDS is genetic, so if you had it, your children might too.

• Provide emotional healing: Realizing your childhood struggles were rooted in a medical condition—not laziness or weakness—can be deeply affirming.

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FAQ: Common Questions About Early Signs of EDS

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What are the early signs of Ehlers-Danlos Syndrome in childhood?

Early signs include hypermobile joints, chronic fatigue, bruising easily, digestive issues, and frequent injuries from minor activities.

Can you have Ehlers-Danlos and not know until adulthood?

Yes, many people live with undiagnosed EDS well into adulthood, especially if their symptoms were subtle or dismissed as normal growing pains.

Is EDS visible at birth?

In rare severe forms, like vascular EDS, signs may be evident at birth. For most people with hEDS, signs develop gradually through childhood and adolescence.

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👉 Why This List Matters: Real Signs You May Have Had EDS Growing Up?

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Why This List Matters: Real Signs You May Have Had EDS Growing Up

Many people don’t realize until years—even decades—later that the strange aches, unexplained bruises, or constant tiredness they experienced as children were actually signs of a genetic connective tissue disorder. Recognizing the 23 signs you grew up with Ehlers-Danlos Syndrome isn’t just a moment of self-reflection—it can be life-changing.

In fact, many adults receive their EDS diagnosis only after their children begin showing similar symptoms. This delayed diagnosis isn’t just frustrating—it can lead to years of unnecessary pain, medical gaslighting, and emotional distress.

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🧠 Why You May Have Missed These Signs as a Child

Growing up, you probably heard things like:

• “You’re just flexible!”

• “Everyone gets tired sometimes.”

• “You’re just clumsy.”

• “It’s all in your head.”

The truth is, many of these seemingly harmless remarks mask serious signs of Ehlers-Danlos Syndrome. Childhood signs are frequently overlooked because:

• Healthcare professionals often aren’t trained to recognize EDS.

• Many symptoms mimic normal childhood complaints.

• Parents and teachers don’t know what to look for.

For years, this has caused EDS to be labeled a “zebra diagnosis”—rare, misunderstood, and often the last thing doctors consider.

“When you hear hoofbeats, think horses, not zebras.” — medical proverb
People with EDS are the zebras in a world trained to expect horses.

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📊 Why This Blog Post Can Help You or Someone You Love

Understanding the 23 signs you grew up with Ehlers-Danlos Syndrome can help in several key ways:

✅ 1. Validation

Many adults carry emotional wounds from being ignored or dismissed in childhood. Realizing there was a reason behind the pain helps heal years of self-doubt and frustration.

✅ 2. Diagnosis and Treatment

Being able to identify these signs can guide you toward getting a formal diagnosis, which is essential for managing symptoms and accessing treatment such as physiotherapy, bracing, or medication.

✅ 3. Family Awareness

EDS is genetic, so if you have it, your siblings or children might too. Early identification can improve quality of life and prevent long-term complications.

✅ 4. Building Community

Realizing others experienced the same struggles as you did fosters connection, support, and empowerment. You’re not alone—and neither are they.

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🧬 Case Study: Diagnosed After 30 Years

Name: Sarah M.
Diagnosis: Hypermobile EDS
Age of Diagnosis: 33

“I was told I had anxiety and was just sensitive. It wasn’t until my daughter was diagnosed at 6 that I finally saw a geneticist. Turns out, all those years of joint pain, fatigue, and fainting spells were EDS. Knowing the signs earlier would have changed everything.”

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🧩 FAQs: Why Recognizing Childhood Signs of EDS Matters

Why does it take so long to diagnose EDS?

Symptoms can vary and mimic many common childhood issues. Many doctors aren’t trained to identify EDS, especially in children.

How can identifying signs early help my child?

Early diagnosis allows for joint protection, physical therapy, and lifestyle adjustments that can prevent long-term damage.

Can EDS get worse if untreated?

Yes, unmanaged EDS can lead to joint dislocations, chronic pain, fatigue, and even mental health struggles due to misdiagnosis or lack of care.

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Up next is the core of the article:
👉 The 23 Signs You Grew Up with Ehlers-Danlos Syndrome
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The 23 Signs You Grew Up with Ehlers-Danlos Syndrome

Each of these signs represents more than just a symptom—it’s a clue. A piece of the puzzle you may have lived with for years, quietly shaping your childhood. If multiple signs resonate with you, it’s worth exploring a potential diagnosis with a medical professional, especially a geneticist or EDS-aware rheumatologist.

Let’s explore each sign in detail:

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1. You Were “Double-Jointed” and Thought It Was Cool

As a child, you may have been praised for your party tricks—touching your thumb to your wrist, doing the splits without stretching, or bending your knees backward. This is called hypermobility, and while it may have seemed like a talent, it was likely one of the earliest signs you grew up with Ehlers-Danlos Syndrome.

Medical Insight:
Hypermobility is a core diagnostic feature in hEDS. It often leads to joint instability, frequent dislocations, and early joint degeneration if left unmanaged.

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2. Frequent Sprains and Dislocations from Minor Activities

Did you twist your ankle while walking in the hallway? Dislocate a shoulder reaching for something on a shelf? If these things happened regularly, you likely experienced joint subluxations or full dislocations, a hallmark of connective tissue weakness.

• These weren’t clumsy accidents.

• They were joint instability episodes that pointed to EDS.

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3. Constant “Growing Pains” That Weren’t Just Growing Pains

Many children with EDS are told their chronic aches are simply “growing pains.” But in truth, these pains:

• Occur in non-growth-related areas (like wrists or shoulders)

• Can be intense and daily

• Are not alleviated by rest or stretching

EDS-related pain is caused by overworked joints, tissue micro-tears, and muscle compensation for joint laxity.

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4. You Always Felt Tired No Matter How Much You Slept

EDS children often experience chronic fatigue, not just sleepiness. That includes:

• Waking up unrefreshed

• Feeling drained after minor exertion

• Needing naps or frequent breaks

🧠 Fatigue is often tied to autonomic dysfunction (like POTS) or the constant energy spent stabilizing joints.

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5. Your Skin Bruised Easily and Healed Slowly

If you were always covered in mysterious bruises, even though you didn’t remember bumping into anything, it’s likely due to fragile capillaries. EDS skin is often:

• Thin and translucent

• Bruises or scars easily

• Slow to heal, especially after cuts or scrapes

In classical EDS, skin may feel velvety and hyperextensible as well.

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6. Clumsiness Was a Way of Life

Always tripping? Dropping things? Walking into doorways?

That’s not just bad coordination—it could be poor proprioception, or the body’s awareness of itself in space. Many people with EDS struggle with this because of loose joints and weak connective tissue.

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7. You Had Digestive Issues No One Could Explain

Did you grow up with stomachaches, bloating, or constipation? Children with EDS often suffer from gastrointestinal problems, including:

• Reflux

• IBS-like symptoms

• Nausea

• Difficulty digesting certain foods

These issues often stem from dysautonomia, sluggish gut motility, or connective tissue laxity in the digestive tract.

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8. Your Teachers Thought You Were Fidgety or Lazy

EDS can affect focus, energy levels, and sitting posture. You might have:

• Shifted constantly in your chair

• Struggled to hold a pencil or write for long

• Been labeled with ADHD or behavioral issues

The truth? It was likely pain, fatigue, or sensory overload interfering with your ability to concentrate—not disobedience.

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9. Frequent Headaches or Migraines Started Young

Headaches in EDS are extremely common and may start in childhood or early adolescence. Causes include:

• Tension from muscle compensation

• Cervical instability

• TMJ dysfunction

• Dysautonomia-related migraines

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10. You Were Extra Sensitive to Touch, Sounds, or Bright Lights

This sensory sensitivity, often misdiagnosed as anxiety or ADHD, is linked to dysregulation in the nervous system common in EDS.

• Tags on shirts bothered you

• Bright lights caused headaches

• Loud sounds were overwhelming

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11. You Always Had an Emergency Ice Pack Nearby

Many EDS children learn early that cold therapy is essential for:

• Joint swelling

• Muscle spasms

• Dislocation aftercare

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12. Your Ankles Rolled Constantly

Weak ankles and collapsed arches are common. This leads to frequent ankle rolling, flat feet, and even needing orthotics as a child.

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13. Your Handwriting Was Messy or Painful to Maintain

You might’ve struggled with:

• Hand cramps

• Dropping pencils

• Poor handwriting despite effort

✍️ This is often due to loose finger joints, fatigue, and fine motor instability in hEDS.

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14. You Had Trouble with PE or Sports Despite Trying Hard

Sports can be incredibly painful for EDS children. You may have:

• Been last in races

• Had recurring injuries

• Avoided team activities due to embarrassment

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15. Scars That Look Like Paper Cuts or Stretch Marks

Even minor cuts might have turned into:

• Thin, papery scars

• Wide or stretched scars

• Premature stretch marks on shoulders, thighs, or back

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16. Doctors Told You It Was “All in Your Head”

This is one of the most emotionally damaging signs. If you were frequently told:

• “There’s nothing wrong.”

• “You’re exaggerating.”

• “You’re just anxious.”

Then you likely experienced medical gaslighting, a tragically common issue in the EDS community.

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17. Frequent Nausea or Dizziness on Standing

Did you feel dizzy when standing up too fast? Or faint after a hot shower?

These are signs of orthostatic intolerance or POTS (Postural Orthostatic Tachycardia Syndrome)—frequently comorbid with EDS.

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18. You Were Always Cold or Hot—Never Comfortable

Children with EDS often have autonomic nervous system issues, leading to poor temperature regulation. You may have:

• Worn a jacket in summer

• Sweated excessively while resting

• Had cold hands and feet all the time

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19. You Had TMJ or Jaw Clicking Early On

Clicking, popping, or locking jaws as a child? That’s likely temporomandibular joint dysfunction—very common in those with hypermobile EDS.

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20. Chronic Nosebleeds or Bleeding Gums

EDS affects capillary strength, leading to:

• Regular nosebleeds

• Bleeding after brushing teeth

• Difficulty clotting from minor wounds

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21. “Resting” Never Made the Pain Go Away

One of the most frustrating things about EDS pain is that it’s constant. You may have found that:

• Naps didn’t help

• Lying down worsened joint pain

• People thought you were faking because you never “got better”

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22. Wearing a Backpack or Tight Clothes Was Unbearable

EDS can cause pressure sensitivity. Backpacks, bra straps, waistbands, and even socks may have felt uncomfortably tight—even painful.

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23. You Felt “Different” But Couldn’t Explain Why

Maybe you didn’t fit in with other kids. You couldn’t keep up. You were sick more often, missed school, or simply felt “off.”

That deep, unspoken difference? It may have been EDS all along.

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🧠 FAQ: Recognizing Signs of EDS in Childhood

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What is the earliest sign of EDS in kids?

Hypermobility (bendy joints) and chronic pain are usually the first signs noticed.

Are these signs always present in children with EDS?

No, symptoms vary widely. Some children only show a few signs while others have full-body symptoms.

Can these signs appear in adulthood?

Yes, many EDS symptoms intensify or become more noticeable as a person ages.

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What to Do If You Recognize These Signs?

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What to Do If You Recognize These 23 Signs You Grew Up with Ehlers-Danlos Syndrome

If you found yourself nodding or even tearing up while reading the 23 signs you grew up with Ehlers-Danlos Syndrome, you’re not alone. Many people reach adulthood unaware they’ve lived with a genetic condition their whole lives. But recognizing these signs is only the beginning of your journey.

This section is all about taking empowered steps forward—from self-education and diagnosis to building a support network and seeking the right medical care.

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🧭 Step 1: Document Your Symptoms

Start by creating a symptom journal. This is essential not only for your own clarity but also when consulting with healthcare professionals. Include:

• Types of pain (location, intensity, triggers)

• Joint dislocations or subluxations (frequency, causes)

• Digestive issues (timing, severity, food triggers)

• Fatigue and sleep patterns

• Dizziness or POTS-like symptoms

• Skin issues (bruising, scarring, fragility)

✍️ Tip: Use symptom tracking apps like Bearable, Symple, or a simple Google Sheet to maintain records.

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🧬 Step 2: Consult a Specialist Familiar with EDS

Because EDS is underdiagnosed, it’s important to find a specialist who understands it. This is often a:

• Geneticist – especially for Classical, Vascular, or other types with known gene mutations

• Rheumatologist – often the first point of contact for hEDS or joint-related issues

• Neurologist or Cardiologist – if autonomic dysfunction or POTS symptoms are severe

👩‍⚕️ How to Find the Right Doctor:

• Look for clinics listed on the Ehlers-Danlos Society’s Medical Directory

• Ask in EDS support groups for doctor recommendations in your area

• Search terms like “hypermobility-aware doctor” or “EDS-friendly rheumatologist”

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🧪 Step 3: Understand Diagnostic Criteria for EDS

Not all types of EDS can be diagnosed through a genetic test. Here’s a breakdown:

If you suspect hEDS, the diagnostic process includes:

• Beighton Score (joint flexibility test)

• Family history review

• Assessment of systemic symptoms

⚠️ Note: Diagnosis should only be made by a trained specialist. Avoid self-diagnosing based on internet content alone.

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🤝 Step 4: Connect with the EDS Community

Living with Ehlers-Danlos Syndrome can be isolating—especially when you’ve spent years feeling misunderstood. That’s why community matters.

Where to Find Support:

• Facebook Groups: “EDS Support Group,” “EDS Awareness,” “Moms with EDS Kids”

• Reddit: r/ehlersdanlos

• The Ehlers-Danlos Society Forum

• Local support groups via hospitals or nonprofits

You’ll find tips, encouragement, and even doctor referrals from people who’ve walked in your shoes.

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🧠 Step 5: Start Managing Symptoms—Even Without a Diagnosis

You don’t have to wait for a diagnosis to start making lifestyle changes that support your joints, energy, and wellbeing.

🌿 Helpful Management Tips:

• Low-impact exercise: swimming, Pilates, resistance bands

• Joint protection tools: braces, compression gear, KT tape

• Balanced routines: pacing, frequent rest breaks, energy budgeting

• Nutritional support: anti-inflammatory foods, gut-friendly diet

• Hydration & salt intake: especially if POTS symptoms are present

“Managing EDS means listening to your body, not pushing through the pain.” — EDS Warrior, 2020

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🔁 Step 6: Talk to Your Family

Because EDS is genetic, it’s vital to have open conversations with family. Some relatives may:

• Have milder or different symptoms

• Be unaware they carry the gene

• Benefit from early interventions if they recognize signs in themselves or their children

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📌 FAQs: Next Steps After Recognizing EDS Symptoms

Can I be diagnosed with EDS as an adult?

Yes. Many people aren’t diagnosed until their 30s, 40s, or later—especially those with hEDS, which lacks a genetic test.

What if my doctor says EDS is rare or unlikely?

EDS is still misunderstood in the medical field. If you feel dismissed, seek a second opinion—preferably from an EDS-aware specialist.

Will a diagnosis change my treatment?

Absolutely. A diagnosis opens doors to proper management, referrals, physical therapy, accommodations at work/school, and emotional validation.

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👉 Living with Ehlers-Danlos Syndrome as an Adult?

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Living with Ehlers-Danlos Syndrome as an Adult: The Long-Term Impact of Growing Up with Undiagnosed EDS

After recognizing the 23 signs you grew up with Ehlers-Danlos Syndrome, it’s natural to reflect on how those childhood experiences shaped your adult life. For many, undiagnosed EDS leads to ongoing health challenges, strained relationships, difficulties in school or work, and a sense of being misunderstood for years.

But the good news is this: understanding your past helps you take control of your future.

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🧬 How Childhood EDS Translates Into Adult Challenges

Let’s break down how some of the early signs evolve and affect adulthood:

🧠 Fact: According to the Ehlers-Danlos Society, many EDS patients report receiving 5–10 misdiagnoses before getting a proper one.

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💼 EDS in Work and Career

Living with Ehlers-Danlos Syndrome often affects professional life. Some adults:

• Struggle with consistent energy levels

• Experience joint dislocations while typing or lifting

• Need workplace accommodations (e.g., ergonomic chairs, flexible hours)

If you’ve ever wondered why you struggled to hold down full-time work, it may not be a lack of ability—but a lack of appropriate support and diagnosis.

🔧 Workplace Accommodations That Help:

• Speech-to-text software

• Anti-fatigue mats and ergonomic chairs

• Flexible or remote work hours

• Access to physical therapy or occupational support

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🏠 Relationships and Mental Health

Undiagnosed EDS can impact relationships and emotional wellbeing too:

• Feeling like others don’t understand your pain

• Being accused of exaggerating or seeking attention

• Experiencing medical trauma from years of dismissal

• Coping with anxiety, depression, or PTSD from medical gaslighting

🧘‍♀️ Mental Health Support Options:

• Cognitive Behavioral Therapy (CBT) for chronic illness coping

• EMDR for trauma related to misdiagnosis or neglect

• EDS-aware therapists (find via Psychology Today or therapy directories)

“The emotional scars of not being believed can hurt more than the physical ones.”

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👫 Building a Support System

One of the most important things you can do is surround yourself with people who believe you—whether that’s family, friends, or an online support group.

Trusted EDS Communities:

• The Ehlers-Danlos Society – ehlers-danlos.com

• EDS Wellness – health-focused resources and articles

• Instagram/TikTok: Follow EDS creators who share daily living tips

• YouTube: Channels like “Chronically Jenni” or “EDS & Me” offer personal stories and medical insights

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🛠️ Chronic Illness Tools That Make Life Easier

Many adults living with Ehlers-Danlos Syndrome use tools to improve daily functioning:

• Bracing: For knees, wrists, ankles—prevents dislocations

• Mobility aids: Canes, wheelchairs, or walkers for flare days

• Cooling/heating pads: For joint inflammation and pain

• Compression garments: Especially useful for POTS or circulation issues

• Meal delivery/planning services: For days when energy is low

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📘 Case Example: From Confusion to Control

Name: Jason R., Age 38
“I always felt different, but doctors just said I was anxious. After being diagnosed with hEDS at 34, everything started making sense. I finally understood my body wasn’t broken—it was just built differently.”

Jason now uses:

• A standing desk

• Custom orthotics

• A personal trainer trained in EDS-safe movement

“I’m not cured—but I finally feel like I’m living, not just surviving.”

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📌 FAQs: Ehlers-Danlos Syndrome in Adulthood

Can EDS symptoms worsen over time?

Yes. Without proper management, symptoms can become more disabling due to cumulative joint damage and fatigue.

Is there a cure for EDS?

There is no cure, but many people live fulfilling lives through symptom management, physical therapy, pacing, and lifestyle adaptations.

Can you live a normal life with EDS?

Yes—with proper diagnosis, support, and accommodations, many people thrive, work, and raise families successfully with EDS.

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👉 FAQs about Childhood Ehlers-Danlos Syndrome?

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FAQs About Childhood Ehlers-Danlos Syndrome

Answers to the Most Common Questions About Growing Up with EDS

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❓ Can you have Ehlers-Danlos Syndrome and not know it until adulthood?

Yes. In fact, many people live for decades without realizing their childhood symptoms were signs of Ehlers-Danlos Syndrome. This is especially common with hypermobile EDS (hEDS), which lacks a genetic test and is diagnosed clinically. Symptoms like chronic joint pain, fatigue, and GI issues are often misattributed to anxiety, poor fitness, or psychosomatic causes.

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❓ What are the earliest signs of Ehlers-Danlos Syndrome in children?

Early signs include:

• Unusual joint flexibility (“double-jointed”)

• Frequent sprains or dislocations

• Chronic fatigue, even after sleep

• Bruising or scarring easily

• Digestive issues like constipation or reflux

These early signs often appear before age 10, but are frequently dismissed as normal childhood issues.

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❓ How young can a child be diagnosed with EDS?

A child can be evaluated for EDS as early as infancy, especially in cases where genetic subtypes like Classical or Vascular EDS are suspected. However, hypermobile EDS is usually diagnosed in adolescence or adulthood due to the lack of a definitive genetic marker and the need to observe a pattern of symptoms over time.

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❓ Is hypermobility always a sign of EDS?

No. While hypermobility is a key symptom of many EDS types, it also appears in:

• Benign Joint Hypermobility Syndrome (BJHS)

• Marfan Syndrome

• Normal developmental stages in children

The difference lies in the presence of additional systemic symptoms, like chronic pain, fatigue, GI issues, or autonomic dysfunction.

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❓ What kind of doctor diagnoses EDS in kids or adults?

• Geneticist – for types with genetic testing

• Rheumatologist – especially for hEDS and joint pain

• Cardiologist – if there’s POTS, fainting, or heart palpitations

• Gastroenterologist – for chronic digestive symptoms

• Physiatrist or Orthopedist – for musculoskeletal management

Always look for EDS-aware providers, ideally listed in the Ehlers-Danlos Society’s directory.

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❓ Can EDS symptoms come and go?

Yes. Many people with EDS experience fluctuating symptoms. For example:

• You may go months with mild discomfort, then have flare-ups of pain or fatigue

• Stress, illness, hormone shifts, or overexertion can trigger symptom spikes

• Teens may experience worsening symptoms during growth spurts

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❓ Is Ehlers-Danlos Syndrome a disability?

It can be, depending on severity. While some live relatively unaffected lives, others may experience:

• Debilitating pain

• Severe fatigue

• Mobility limitations

• GI or cardiovascular complications

Many people with EDS qualify for disability accommodations or benefits, especially when symptoms interfere with daily functioning or work.

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❓ How can parents help a child who might have EDS?

• Track symptoms with a daily log

• Advocate for referrals to specialists

• Adjust home life: soft furniture, proper footwear, no heavy backpacks

• Advocate for school accommodations (504 plan or IEP in the U.S.)

• Educate teachers and caregivers about the condition

The earlier the support, the better the child’s chances of preventing long-term joint damage and emotional distress.

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23 Signs You Grew Up with Ehlers-Danlos Syndrome

How to Recognize the Early Clues and What to Do Next

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Recap: Frequently Asked Questions (FAQs)

(Optimized for Generative and Answer Engines)

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 What are the 23 signs you grew up with Ehlers-Danlos Syndrome?

These signs include joint hypermobility, chronic pain, fatigue, frequent sprains or dislocations, gastrointestinal issues, easy bruising, poor proprioception, sensitivity to sensory input, and more. See full list above.

 Can you have Ehlers-Danlos Syndrome without knowing it?

Yes. Many people only discover they have EDS in adulthood, especially those with hypermobile EDS, which lacks a genetic test and presents with broad, misunderstood symptoms.

 Is hypermobility always related to EDS?

Not necessarily. Some people are hypermobile without having EDS. What sets EDS apart is the presence of other symptoms like chronic pain, fatigue, fragile skin, and autonomic dysfunction.

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 What kind of doctor diagnoses Ehlers-Danlos Syndrome?

A geneticist, rheumatologist, or multidisciplinary EDS clinic can diagnose the condition. It’s important to seek out providers familiar with EDS due to its complex, multisystemic nature.

 What should I do if I recognize these signs in myself or my child?

Start by:

• Documenting symptoms

• Seeking a referral to a specialist

• Joining support groups

• Making lifestyle adjustments like pacing, bracing, or physical therapy

• Advocating for school or workplace accommodations

 Is EDS a serious condition?

It can be. While some people experience mild symptoms, others live with chronic pain, mobility challenges, vascular risks (in rare types), or severe fatigue. Proper management is key to improving quality of life.

Conclusion: You’re Not Alone—And You’re Not Imagining It

If you’ve spent your life hearing phrases like:

• “You’re just sensitive.”

• “It’s all in your head.”

• “You just need to try harder.”

…then finally understanding the 23 signs you grew up with Ehlers-Danlos Syndrome can feel both heartbreaking and liberating.

Realizing there’s a medical reason for your struggles is the first step toward healing, advocating, and thriving. Whether you’re newly recognizing these patterns or supporting a loved one through diagnosis, you now have a clearer roadmap—one built on validation, knowledge, and community.

“The day I learned about EDS was the day I stopped blaming myself.” — EDS Advocate

Take Action Today:

• Revisit the signs and document your personal experiences

• Schedule an appointment with an EDS-aware doctor

• Educate yourself with resources from the Ehlers-Danlos Society

• Connect with others living with EDS—online or in your local area

• Share this blog to help others recognize the signs they may have missed

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Further Reading and Resources

• The Ehlers-Danlos Society

• EDS Wellness

• r/ehlersdanlos on Reddit

• [Books: “Disjointed” by Diana Jovin, “Living Life to the Fullest with EDS” by Kevin Muldowney PT]