Ehlers-Danlos Syndromes (EDS)

All disabled people have the right to the highest attainable standard of health without discrimination. This page centers disabled people’s expertise and is informed by disabled-led organizing globally.

Why This Matters

Ehlers-Danlos syndromes are a group of connective tissue disorders that affect how your body builds and maintains the structure that holds you together—your connective tissue. When your collagen doesn’t work properly, it affects everything: your joints dislocate easily, your skin may be stretchy or fragile, your organs can be affected, and pain becomes a constant companion.

The average person with hypermobile EDS sees 10-15 clinicians over 10-12 years before diagnosis. Along the way, they receive an average of 10 misdiagnoses—most commonly fibromyalgia, chronic fatigue syndrome, or being told their pain is “just in their head” or “growing pains.”

EDS is often called “the invisible disability.” You can look fine while your shoulder is partially dislocated, while you’re in severe pain, while your autonomic nervous system is malfunctioning. The medical community has failed people with EDS for generations, dismissing their symptoms as anxiety or hypochondria—particularly dismissing women, who make up 70% of diagnosed cases but wait an average of 16 years for diagnosis compared to 4 years for men.

The EDS community uses the zebra as their symbol, from the medical saying “when you hear hoofbeats, think horses, not zebras.” But EDS isn’t as rare as once thought—recent research suggests hypermobile EDS affects 1 in 500 to 1 in 5,000 people, making it far more common than many “horses” medical students learn to look for first.

If you’re reading this because you suspect you have EDS, or you’ve just been diagnosed: you’re not imagining your symptoms, you’re not fragile or broken, and you deserve care that understands your condition.

What EDS Actually Is

Medical definition: Ehlers-Danlos syndromes are a group of 13 heritable connective tissue disorders characterized by joint hypermobility, skin hyperextensibility, and tissue fragility. Each type has different genetic causes and different risks.

In plain language: Your connective tissue—mainly collagen—is like the glue and scaffolding that holds your body together. In EDS, the collagen is faulty, like building a house with defective materials. This affects your joints (they bend too far and dislocate), your skin (it may stretch more than normal or bruise easily), your blood vessels (they may be weak), your digestive system, your autonomic nervous system, and more.

The 2017 International Classification identified 13 distinct types of EDS:

The 13 Types of EDS

Type	Abbreviation	Gene(s)	Inheritance	Key Features
Hypermobile EDS	hEDS	Unknown	Likely autosomal dominant	Most common; joint hypermobility, chronic pain, soft skin
Classical EDS	cEDS	COL5A1, COL5A2	Autosomal dominant	Skin hyperextensibility, atrophic scarring, joint hypermobility
Vascular EDS	vEDS	COL3A1	Autosomal dominant	Most serious; risk of arterial/organ rupture
Classical-like EDS	clEDS	TNXB	Autosomal recessive	Similar to classical EDS without atrophic scarring
Cardiac-valvular EDS	cvEDS	COL1A2	Autosomal recessive	Severe progressive heart valve problems
Arthrochalasia EDS	aEDS	COL1A1, COL1A2	Autosomal dominant	Severe hypermobility, congenital hip dislocation
Dermatosparaxis EDS	dEDS	ADAMTS2	Autosomal recessive	Extreme skin fragility, sagging redundant skin
Kyphoscoliotic EDS	kEDS	PLOD1, FKBP14	Autosomal recessive	Severe muscle weakness, progressive scoliosis
Brittle Cornea Syndrome	BCS	ZNF469, PRDM5	Autosomal recessive	Risk of corneal rupture, hearing loss
Spondylodysplastic EDS	spEDS	B4GALT7, others	Autosomal recessive	Short stature, skeletal abnormalities
Musculocontractural EDS	mcEDS	CHST14, DSE	Autosomal recessive	Joint contractures at birth
Myopathic EDS	mEDS	COL12A1	Autosomal dominant/recessive	Muscle weakness, hypotonia
Periodontal EDS	pEDS	C1R, C1S	Autosomal dominant	Severe early-onset gum disease

This page primarily focuses on hypermobile EDS (hEDS), the most common type, though many principles apply across types.

Hypermobile EDS: The Type Without a Genetic Test

Hypermobile EDS is both the most common type and the only type without a genetic test. For the other 12 types, genetic testing can confirm the diagnosis. For hEDS, diagnosis is made clinically—based on meeting specific criteria developed in 2017.

Why no genetic test? hEDS is likely genetically heterogeneous, meaning multiple genes are involved, with complex inheritance patterns. The HEDGE Study (Hypermobile Ehlers-Danlos Genetic Evaluation) is actively searching for genetic causes.

Major 2024 breakthrough: Researchers at MUSC discovered KLK15 gene variants in 33% of hEDS patients—the first concrete genetic marker. This doesn’t provide a diagnostic test yet (not all hEDS patients have this variant), but it’s a significant step forward.

What this means for you: If you suspect hEDS, you can’t just get a genetic test to confirm it. You need to meet the clinical criteria (explained below) and have other types of EDS ruled out.

How Common Is EDS?

Overall EDS prevalence: Approximately 1 in 5,000 people worldwide have some type of EDS.

hEDS specifically: Estimates range from 1 in 500 to 1 in 5,000. A landmark 2019 Welsh study found EDS and Hypermobility Spectrum Disorder are 10 times more common than previously thought.

Gender: Diagnosed populations are 70% female, 30% male. This likely reflects both genuine prevalence differences and gender bias in diagnosis—women wait an average of 8.5 years longer than men for diagnosis.

Interesting finding: Recent studies (2024-2025) found 2.6-2.7% prevalence of hEDS in gender-affirming care clinics—significantly higher than general population estimates. The reason for this overlap is under investigation.

The 2017 hEDS Diagnostic Criteria

To be diagnosed with hypermobile EDS, you must meet ALL THREE criteria:

Criterion 1: Generalized Joint Hypermobility (GJH)

You need a positive Beighton Score:

≥5 out of 9 points if you’re 50 or younger
≥4 out of 9 points if you’re over 50

The Beighton Score tests 5 joints:

Can you bend your pinky finger back beyond 90°? (1 point each hand)
Can you bend your thumb to touch your forearm? (1 point each side)
Do your elbows hyperextend beyond 10°? (1 point each)
Do your knees hyperextend beyond 10°? (1 point each)
Can you put your palms flat on the floor with straight knees? (1 point)

Important: The Beighton Score only looks at 5 joints. You can have significant hypermobility in other joints (shoulders, hips, ankles, spine) that this test misses. It’s a screening tool, not a comprehensive assessment.

Criterion 2: Two or More Features

You need at least 2 of these 3 features:

Feature A: Systemic manifestations of a generalized connective tissue disorder (≥5 of 12):

Unusually soft or velvety skin
Mild skin hyperextensibility
Unexplained striae (stretch marks) not related to weight changes
Piezogenic papules on heels
Recurrent or multiple hernias
Atrophic scaring (sunken scars in at least 2 sites)
Pelvic floor, rectal, or uterine prolapse
Dental crowding and high or narrow palate
Arachnodactyly (long, slender fingers)
Arm span to height ratio ≥1.05
Mitral valve prolapse
Aortic root dilation

Feature B: Positive family history

At least one first-degree relative (parent, sibling, child) who independently meets the criteria for hEDS

Feature C: Musculoskeletal complications (≥1 required):

Chronic pain (musculoskeletal type) in 2 or more limbs, recurring daily for at least 3 months
Chronic, widespread pain for ≥3 months
Recurrent joint dislocations or frank joint instability in absence of trauma
- Either: ≥3 atraumatic dislocations in the same joint OR
- Or: ≥2 atraumatic dislocations in 2 different joints occurring at different times
Medical confirmation of joint instability at ≥2 sites not related to trauma

Criterion 3: Prerequisites

Absence of unusual skin fragility (which would suggest other types of EDS)
Exclusion of other heritable and acquired connective tissue disorders

Your doctor must rule out:

Other types of EDS (through genetic testing if features suggest them)
Loeys-Dietz syndrome
Marfan syndrome
Osteogenesis imperfecta
Acquired conditions like lupus, rheumatoid arthritis

What if you’re close but don’t quite meet criteria? You may have Hypermobility Spectrum Disorder (HSD)—you still have significant hypermobility causing problems, but you don’t meet all the criteria for hEDS. Treatment approaches are often similar.

The Diagnostic Odyssey

If you’re struggling to get diagnosed, these statistics validate your experience:

Average time to diagnosis: 10-12 years
Average of 15.6 clinicians seen before correct diagnosis
Average of 10 misdiagnoses before hEDS identified
67% misdiagnosed with fibromyalgia
81% of people diagnosed with ME/CFS or fibromyalgia meet criteria for hypermobility

Common Misdiagnoses

Before EDS is identified, people are frequently diagnosed with:

Fibromyalgia (67% of EDS patients received this misdiagnosis first)
Chronic Fatigue Syndrome
“Growing pains” (especially in children and teens)
Anxiety or other psychiatric conditions
Functional neurological disorder
Multiple sclerosis (when neurological symptoms present)
Rheumatoid arthritis
Hypochondria or “attention-seeking”

Medical gaslighting is systematic: A 2024 study found 94.4% of hEDS patients experienced psychiatric misdiagnosis by non-psychiatrists, with 88% told they were “making it up” and 76% told they were “attention-seeking.”

Why Diagnosis Is So Difficult

Lack of medical education: Many doctors receive little to no training on EDS
“You look fine” bias: EDS is largely invisible
Complex, multi-system symptoms that don’t fit one specialty
Gender bias: Women’s pain chronically dismissed
No simple blood test for hEDS
The medical saying “when you hear hoofbeats, think horses, not zebras”—except EDS isn’t as rare as most doctors think

How EDS Affects Your Daily Life

Joint Problems

Hypermobility and instability:

Joints bend further than they should (party trick when young, source of pain later)
Joints subluxate (partially dislocate)—your shoulder, jaw, ribs, or fingers slip out and back in
Joints fully dislocate—your kneecap slides off, your shoulder pops out
Early-onset osteoarthritis (in 20s and 30s, not 60s and 70s)
Reduced proprioception—difficulty knowing where your body is in space

What this means practically:

Walking on uneven ground is dangerous (ankle rolls, knee gives out)
Reaching for things can dislocate your shoulder
Typing can cause finger subluxations
Sleeping is difficult (joints slip out of place)
Need to be careful with physical activity
May need braces, splints, mobility aids

Pain

Types of pain in EDS:

Nociceptive pain from joint damage and inflammation
Neuropathic pain from nerve compression or small fiber neuropathy
Central sensitization where your nervous system amplifies pain signals
Chronic widespread pain—often meets criteria for fibromyalgia
Muscle pain from muscles working overtime to stabilize loose joints

What people with EDS say about pain: “My baseline is what most people would call a 4 or 5 out of 10. I’ve recalibrated what I call ‘fine.’”

“It’s not that I’m ‘good at handling pain’—I just have so much practice that I appear to function normally even when I’m hurting.”

Skin

Soft, velvety texture (very noticeable to touch)
Mild hyperextensibility (stretchier than normal, but not dramatically)
Easy bruising—mysterious bruises appear constantly
Poor wound healing—cuts take longer to heal
Atrophic scarring—sunken, papery scars
Stretch marks unrelated to pregnancy or weight changes

Gastrointestinal System

Very common in EDS:

Gastroesophageal reflux disease (GERD)
Gastroparesis (delayed stomach emptying)
Functional dyspepsia
Irritable bowel syndrome (IBS) symptoms
Constipation or diarrhea
Hernias (hiatal, inguinal, umbilical)

A 2025 study led to new clinical guidance: “When clinicians see disorders of the gut-brain axis, they should be thinking, ‘Could this be related to joint hypermobility or EDS?’”

Autonomic Nervous System

41-80% of people with hEDS have POTS (Postural Orthostatic Tachycardia Syndrome)—see Postural Orthostatic Tachycardia Syndrome.

Other autonomic issues:

Temperature regulation problems
Excessive sweating or inability to sweat
Blood pressure fluctuations
Digestive motility problems

Other Systems

Chronic fatigue—not the “tired after a long day” kind
Migraines and headaches (67% of hEDS patients)
TMJ dysfunction—jaw pops, clicks, dislocates
Dental crowding
Cardiovascular: Mitral valve prolapse (more common), aortic root dilation (less common, monitor regularly)
Mast Cell Activation Syndrome (MCAS): 48% of hEDS patients—see Mast Cell Activation Syndrome
Resistance to local anesthetics—lidocaine may not work well for dental work or minor procedures

Neurological

Chiari malformation: 10-13% of hEDS patients
Craniocervical instability (CCI): 85% in one study of EDS patients seeking neurosurgical evaluation
Small fiber neuropathy: ~50% in some studies
Numbness, tingling, burning sensations

Treatment: What Actually Helps

Critical first point: There is no cure for EDS. Treatment focuses on managing symptoms, preventing injuries, and maximizing function.

Physical Therapy—The Cornerstone

Physical therapy is the most important treatment for EDS, but it must be specialized. Traditional PT approaches can be harmful.

What works:

Low-resistance, high-repetition strengthening—building muscle to stabilize joints
Closed kinetic chain exercises—feet or hands fixed in place (safer than open chain)
Proprioception training—retraining your sense of where your body is in space
Core stabilization
Pacing strategies—balancing activity and rest

What can be harmful:

Traditional aggressive stretching (you’re already too flexible)
Pushing joints to end-range of motion
High-impact activities without proper preparation
Joint mobilizations that increase hypermobility
Standard exercise programs without modification

Finding the right PT: Look for physical therapists familiar with EDS or hypermobility. The Ehlers-Danlos Society maintains a provider directory. Terms to look for: “hypermobility-informed,” “EDS experience,” “Muldowney Protocol.”

See Exercise and Adaptive Sports for specific modifications.

Braces, Splints, and Supports

Ring splints for fingers (silver ring splints are popular and functional)
Knee braces for instability
Ankle braces or AFOs (ankle-foot orthoses)
Wrist braces for typing, writing
Compression garments for proprioception and circulatory support
Thumb splints for basal joint instability
Neck braces (with guidance—can cause muscle atrophy if overused)

Philosophy: Use bracing strategically. Constant bracing can lead to muscle weakening, but selective bracing prevents injury and allows activity.

Mobility Aids

Many people with EDS use mobility aids part-time or full-time:

Cane or trekking poles for stability
Wheelchair or scooter for longer distances or bad days
Rollator (rolling walker) with seat for resting
Shower chair
Reaching aids

Confronting ableism: You may face judgment for using a mobility aid when you’re “young” or can walk sometimes. Your medical needs are valid regardless of age or whether your disability is visible or fluctuating.

See Mobility Aids for detailed guidance.

Pain Management

Non-medication approaches:

Physical therapy
Heat/cold therapy (preferences vary by person)
TENS unit
Gentle massage (avoid deep tissue—can injure)
Acupuncture (some find helpful)
Pacing and energy conservation

Medications:

NSAIDs (ibuprofen, naproxen)—help some, not others
Acetaminophen (Tylenol)
Topical analgesics
Muscle relaxants
Neuropathic pain medications (gabapentin, pregabalin, duloxetine)
Low-dose naltrexone (LDN)—some patients report benefit
Opioids: Controversial and complex; can trigger mast cell issues

What to be cautious with:

Corticosteroid injections—can weaken tendons in EDS
Fluoroquinolone antibiotics (Cipro, Levaquin)—linked to tendon rupture

Surgery Considerations

Surgery should be approached cautiously in EDS:

Tissue is fragile and heals poorly
Blood vessels can be weak
Sutures may not hold well
Delayed wound healing common
Risk of new hernias at incision sites
Conservative treatment preferred when possible

If surgery is needed:

Work with surgeons experienced with EDS if possible
Inform anesthesia about potential resistance to local anesthetics
May need longer wound healing time
May need more supportive suturing techniques

Medications That May Help Different Systems

POTS symptoms: See POTS page
GERD: Proton pump inhibitors, H2 blockers
Gastroparesis: Metoclopramide, domperidone (country-dependent availability)
MCAS: Antihistamines, mast cell stabilizers—see MCAS
Migraines: Standard migraine preventatives and treatments

The EDS/POTS/MCAS “Trifecta”

These three conditions occur together so frequently that the medical community now recognizes “the trifecta”:

31% of POTS patients meet criteria for hEDS
41-80% of hEDS patients have POTS symptoms
48% of hEDS patients have MCAS
31% of patients with both POTS and EDS also have MCAS

Why they cluster together: The leading theory is that faulty connective tissue affects both blood vessel function (causing POTS) and mast cell stability (causing MCAS). The 2025 American Gastroenterological Association issued guidance recommending that diagnosis of one condition should prompt screening for the others.

See:

Other Commonly Co-Occurring Conditions

Chiari malformation
Craniocervical instability (CCI) and atlantoaxial instability (AAI)
Small fiber neuropathy
ME/CFS (Chronic Fatigue Syndrome)
Fibromyalgia
Autoimmune conditions (slightly higher prevalence)
Anxiety and depression (likely reactive to chronic pain/medical trauma, not “causing” EDS)

Getting Diagnosed

Which Doctors Diagnose EDS

Medical geneticists (preferred for comprehensive evaluation)
Rheumatologists (often most familiar with hypermobility)
Physical medicine and rehabilitation (PM&R) doctors
Some cardiologists, neurologists, or primary care doctors with specific training

Specialist centers with EDS programs:

United States:

Cleveland Clinic Ehlers-Danlos Syndrome Program (Cleveland, OH)—multidisciplinary
Mayo Clinic (Rochester MN, Jacksonville FL, Phoenix AZ)
Johns Hopkins, NYU Langone, Cincinnati Children’s, and others

United Kingdom:

Sheffield EDS/HSD Service (NHS)—highly regarded
London Hypermobility Unit (private, self-pay or insurance)
UCL Hospital (EDS clinics)

Canada:

GoodHope EDS Clinic (Toronto General Hospital)—first interdisciplinary adult EDS program
SickKids EDS Clinic (Toronto)—pediatric

Australia:

Genetic specialists in major cities
Long wait times; telehealth expanding

Finding a doctor: The Ehlers-Danlos Society maintains a global provider directory at ehlers-danlos.com.

How to Advocate for Evaluation

If your doctor is unfamiliar with EDS:

Bring the 2017 diagnostic criteria (available from The Ehlers-Danlos Society)
Bring the Ehlers-Danlos Society “GP Toolkit” (designed for doctors)
Document your symptoms with photos (bruises, scars, hypermobility)
Bring family history information
Request referral to specialist

If dismissed:

Request the refusal be documented in your medical record
Seek second opinion
Contact patient organizations for provider recommendations
Consider traveling to a specialized center

Living with EDS: Practical Strategies

Daily Life Adaptations

Joint protection:

Learn to recognize when a joint is unstable before it fully dislocates
Use proper body mechanics (lift with legs not back, push don’t pull)
Avoid positions that hyperextend joints
Use adaptive equipment (jar openers, ergonomic tools)

Energy conservation:

Sit whenever possible
Break tasks into smaller chunks
Use wheeled carts instead of carrying
Prepare for “good days” and “bad days”
Practice pacing (don’t do everything on a good day or you’ll pay for it)

Skin care:

Be gentle—your skin tears more easily
Protect skin during activities
Allow extra time for wound healing
Consider scar care products

Temperature regulation:

Layer clothing
Keep cooling aids available (fans, cold packs)
Stay hydrated
Be aware that heat worsens symptoms for many

Pregnancy Considerations

Pregnancy with EDS requires specialized care:

Increased joint instability during pregnancy (relaxin hormone)
Higher risk of complications: Preterm labor, postpartum hemorrhage, pelvic organ prolapse
Vascular EDS has specific serious risks—pregnancy not recommended for vEDS
Work with maternal-fetal medicine specialist
Discuss delivery options with knowledgeable providers
Prepare for longer recovery

See Parenting with a Disability.

What People with EDS Want Others to Know

“Being flexible isn’t a superpower when your joints dislocate from opening a jar.”

“I’m not ‘fragile’—I’m dealing with a genetic condition. There’s a difference.”

“Using a wheelchair doesn’t mean I can never walk. Ambulatory wheelchair users exist.”

“‘But you’re so young!’ Yes. EDS doesn’t care about age.”

“Chronic pain doesn’t show on my face anymore. I’ve learned to mask it. That doesn’t mean I’m not hurting.”

“I’m not making excuses when I say I can’t do something. I’m setting boundaries to protect my body.”

See For Allies for how to support someone with EDS.

Disability Benefits and Workplace Accommodations

United States

Social Security Disability: EDS can qualify under musculoskeletal disorders (Section 1.00), immune system disorders (14.00), or other systems depending on symptoms.

Documentation needed:

Formal diagnosis from geneticist, rheumatologist, or qualified specialist
Medical records documenting chronic symptoms
Physical therapy records
Records of complications (dislocations, surgeries)
Statements about functional limitations

Reality: About 75% of initial applications are denied. Most people need to appeal. Consider working with a disability attorney.

See US SSDI and US SSI.

Workplace accommodations under ADA:

Ergonomic workstation (adjustable desk, supportive chair)
Flexible scheduling for medical appointments
Remote work options
Frequent breaks to move/stretch
Temperature-controlled environment
Assistive devices
Modified duties avoiding repetitive motions

See Workplace Accommodations.

United Kingdom

Personal Independence Payment (PIP): Based on functional impact, not diagnosis name. Document:

Joint instability and subluxations/dislocations
Pain levels and management needs
Fatigue and activity limitations
Mobility limitations
Effects on daily activities

Appeal if denied—success rates are high at tribunal.

Ehlers-Danlos Support UK offers free Benefits and Work guides.

See UK Benefits.

Canada

Canada Pension Plan Disability (CPP-D) and provincial disability programs available.

See Canada Benefits.

Australia

NDIS (National Disability Insurance Scheme): For ages 7-65 with permanent, significant disability.

Key: Focus on functional impairment. Need specialist letters stating impairment is “permanent and lifelong.”

See Australia Benefits.

Current Research and Hope for the Future

Genetic Breakthroughs

2024: KLK15 gene variants found in 33% of hEDS patients—first genetic marker for hEDS.

2025: First evidence of common genetic variants contributing to hEDS through genome-wide association study.

2025: Potential blood biomarker test for hEDS/HSD under development—measuring extracellular matrix components.

Research Funding Challenges

Despite EDS being more common than many conditions that receive extensive funding:

Only $118 million spent on EDS-related research in 38 years (15 projects total)
No dedicated NIH funding historically for hEDS-specific research
The Ehlers-Danlos Society has been primary funder of EDS research

The Road to 2026

The Ehlers-Danlos Society is updating the 2017 classification criteria, with publication expected late 2026:

Updated diagnostic pathways
Assessment and treatment guidelines
Integration of new genetic discoveries

Clinical Trials

Check ClinicalTrials.gov for active studies. Recent areas of investigation:

Physical therapy protocols
Pain management strategies
Autonomic dysfunction treatments
Genetic studies

Community and Support

Patient Organizations

The Ehlers-Danlos Society (ehlers-danlos.com)

Global organization
Provider directory
Educational resources
Support groups
Research funding

Ehlers-Danlos Support UK (ehlers-danlos.org)

Free Adviceline: 0800 907 8518
100+ regional support groups
GP Toolkit for healthcare providers
Schools Toolkit
Benefits guidance

Hypermobility Syndromes Association (hypermobility.org) (UK)

Education and support for hypermobility conditions

EDS Canada Foundation (edscanada.org)

Online Communities

Reddit: r/ehlersdanlos, r/eds
Facebook: Multiple EDS groups (general, by country, by subtype)
Inspire.com: EDS community sponsored by The Ehlers-Danlos Society
Twitter/X: #EDS, #hEDS, #zebra, #EDSAWARE

In-Person Support

The Ehlers-Danlos Society and national organizations organize:

Annual conferences
Regional support group meetings
Educational events

Postural Orthostatic Tachycardia Syndrome—frequently co-occurs
Mast Cell Activation Syndrome—the “trifecta” condition
Chronic Illness—general strategies
Physical Disabilities—broader category
Chronic Pain—pain management strategies
Exercise and Adaptive Sports—safe exercise approaches
Mobility Aids—choosing and using mobility aids
Workplace Accommodations—specific accommodations
Medical Equipment and Assistive Technology—equipment options
For Allies—supporting someone with EDS

This page centers disabled people’s expertise and is informed by disabled-led organizing globally. For questions or to suggest additions, see How to Contribute.

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