🦓 Ehlers-Danlos Syndrome

Comprehensive Symptom Assessment Tool

"When you hear hoofbeats, think horses—but don't forget the zebras."

Educational Purposes Only This tool is provided for informational and educational purposes only. It is not a diagnostic instrument and cannot replace professional medical evaluation. Ehlers-Danlos syndromes require clinical assessment by qualified healthcare providers, often including geneticists and specialists familiar with connective tissue disorders. If you suspect you may have EDS, please consult with a medical professional.
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Ehlers-Danlos syndromes (EDS) are a group of inherited connective tissue disorders affecting collagen production and structure. This checklist focuses primarily on hypermobile EDS (hEDS), the most common subtype, while including symptoms relevant to other EDS variants.

Symptoms marked with 2017 Criteria are specifically referenced in the 2017 hEDS diagnostic criteria. Those marked hEDS Emphasis are particularly prominent in hypermobile EDS.

Age affects how hypermobility is assessed. The Beighton score threshold is higher for children (≥6) than adults (≥5), and joint flexibility naturally decreases with age. Some symptoms like early-onset arthritis or premature osteoporosis are age-dependent findings.

Biological sex influences EDS presentation. Females are diagnosed ~3:1 over males, possibly due to hormonal effects on connective tissue. Some symptoms (pelvic organ prolapse, endometriosis, menstrual irregularities) are sex-specific, while others (like joint hypermobility) may present differently.

Sources & References ▼

The following sources were used to compile this symptom checklist. Each source has been mapped to the symptom categories it primarily addresses. These references provide authoritative information for those seeking to learn more about Ehlers-Danlos syndromes.

Sources are categorized by type: Official EDS Organization Medical Institution Research/Academic Reference

NHS – Ehlers-Danlos Syndromes Medical Institution
https://www.nhs.uk/conditions/ehlers-danlos-syndromes/
Musculoskeletal Features Skin & Soft Tissue Cardiovascular & Autonomic Gastrointestinal Genitourinary & Pelvic
Xcode Life – 23 Signs of Ehlers-Danlos Syndrome Reference
https://www.xcode.life/carrier-status/23-signs-ehlers-danlos-syndrome/
Psychological & Behavioral Neurodevelopmental Comorbidities Allergic & Immune Phenomena Neurological & Pain
Dr. Jim Harris – 23 Signs of Ehlers-Danlos Syndrome Medical Institution
https://www.jimharrismd.com/articles/23-signs-ehlers-danlos-syndrome
Musculoskeletal Features Skin & Soft Tissue Orofacial & Dental Other Features
Medical News Today – Ehlers-Danlos Syndrome Reference
https://www.medicalnewstoday.com/articles/325779
Psychological & Behavioral Neurological & Pain Gastrointestinal
Weill Cornell Neurosurgery – EDS Symptoms and Signs Medical Institution
https://neurosurgery.weillcornell.org/condition/ehlers-danlos-syndrome-eds/symptoms-and-signs-ehlers-danlos-syndrome
Musculoskeletal Features Skin & Soft Tissue Neurological & Pain Eyes & Vision Genitourinary & Pelvic
Wikipedia – Ehlers-Danlos Syndrome Reference
https://en.wikipedia.org/wiki/Ehlers–Danlos_syndrome
Musculoskeletal Features Skin & Soft Tissue Cardiovascular & Autonomic Gastrointestinal Allergic & Immune Phenomena Other Features
The Ehlers-Danlos Society – GP Toolkit Official EDS Organization
https://gptoolkit.ehlers-danlos.org
Cardiovascular & Autonomic Musculoskeletal Features
GeneReviews (NCBI) – Hypermobile Ehlers-Danlos Syndrome Research/Academic
https://www.ncbi.nlm.nih.gov/books/NBK1279/
Musculoskeletal Features 2017 Diagnostic Criteria
The Ehlers-Danlos Society – hEDS Information Official EDS Organization
https://www.ehlers-danlos.com/heds/
Musculoskeletal Features Skin & Soft Tissue hEDS-Specific Features
Verywell Health – Ehlers-Danlos Syndrome Overview Reference
https://www.verywellhealth.com/ehlers-danlos-syndrome-overview-4782662
Skin & Soft Tissue General Overview
Autism/ADHD Comorbidity Research Research/Academic

The following sources document the established comorbidity between EDS/hEDS and neurodevelopmental conditions:

PMC – The Relationship between Autism and Ehlers-Danlos Syndromes/Hypermobility Spectrum Disorders Research/Academic
https://pmc.ncbi.nlm.nih.gov/articles/PMC7711487/
Autism Comorbidity Genetic Overlap Shared Phenotypes Immune Involvement
PMC – Prevalence of ADHD and Autism Spectrum Disorder in Children with HSD or hEDS Research/Academic
https://pmc.ncbi.nlm.nih.gov/articles/PMC7882457/
ADHD Prevalence Autism Prevalence Pediatric Research Swedish Registry Study
PMC – Joint Hypermobility Links Neurodivergence to Dysautonomia and Pain Research/Academic
https://pmc.ncbi.nlm.nih.gov/articles/PMC8847158/
ADHD Association Autism Association Dysautonomia Population Study (7.4x/5.6x Risk)
Autism Research Institute – EDS and Autism Relationship Research/Academic
https://autism.org/researchers-have-identified-a-relationship-between-ehlers-danlos-syndrome-and-autism/
Maternal EDS Risk Factor Autism Comorbidity Immune Factors
SEDS Connective – Ehlers-Danlos Syndromes Links to Autism and ADHD Official EDS Organization
https://www.sedsconnective.org/post/ehlers-danlos-syndromes-links-to-autism-and-adhd
7.4x Autism Risk 5.6x ADHD Risk Sibling Risk Data Cederlöf 2016 Study
Genetics & Inheritance Sources Research/Academic

The following sources document EDS inheritance patterns and family history significance:

The Ehlers-Danlos Society – Genetics and Inheritance of EDS and HSD Official EDS Organization
https://www.ehlers-danlos.com/genetics-and-inheritance/
Inheritance Patterns Genetic Testing hEDS Genetics
GeneReviews (NCBI) – Hypermobile Ehlers-Danlos Syndrome (Updated 2024) Research/Academic
https://www.ncbi.nlm.nih.gov/books/NBK1279/
Autosomal Dominant Inheritance 50% Inheritance Risk 2017 Diagnostic Criteria Family History Criterion
MedlinePlus Genetics – Ehlers-Danlos Syndrome Medical Institution
https://medlineplus.gov/genetics/condition/ehlers-danlos-syndrome/
Inheritance Patterns by Type Genetic Causes De Novo Mutations
Medscape – Genetics of Ehlers-Danlos Syndrome Medical Institution
https://emedicine.medscape.com/article/943567-overview
Genetic Counseling Family Screening Recurrence Risks
Sex/Gender Considerations Research Research/Academic

The following sources document sex and gender disparities in EDS diagnosis and presentation:

The Ehlers-Danlos Society – Accelerating Action for Women with EDS and HSD Official EDS Organization
https://www.ehlers-danlos.com/iwd2025/
70% Female Prevalence Estrogen Influence Diagnostic Delay Gender Bias in Healthcare
BMJ Open – Diagnosed Prevalence of EDS and HSD in Wales, UK Research/Academic
https://pmc.ncbi.nlm.nih.gov/articles/PMC6858200/
70/30 Female/Male Split 9-Year Diagnostic Gap Population Study
Orphanet Journal – Gynecologic Symptoms in 386 Women with hEDS Research/Academic
https://link.springer.com/article/10.1186/s13023-016-0511-2
Menorrhagia (76%) Dysmenorrhea (72%) Dyspareunia (43%) Hormonal Modulation
PMC – Prevalence of hEDS at a Gender-Affirming Primary Care Clinic Research/Academic
https://pmc.ncbi.nlm.nih.gov/articles/PMC11755520/
2.7% Prevalence in TGD Population Gender-Diverse Research Comorbidity Data
Health Monitoring & Comorbidity Sources Research/Academic

The following sources inform the Health Monitoring recommendations:

NCBI StatPearls – Ehlers-Danlos Syndrome Research/Academic
https://www.ncbi.nlm.nih.gov/books/NBK549814/
Cardiovascular Screening Monitoring Recommendations Surgical Considerations
PMC – Cardiovascular Manifestations of hEDS and HSD Research/Academic
https://pmc.ncbi.nlm.nih.gov/articles/PMC9677229/
Cardiovascular Mitral Valve Prolapse Aortic Dilation Echocardiogram
The EDS Clinic – EDS and Comorbid Conditions Medical Institution
https://www.eds.clinic/articles/ehlers-danlos-syndrome-comorbidities
Comorbidities Thyroid Gastrointestinal Neurological
The EDS Clinic – EDS and POTS Medical Institution
https://www.eds.clinic/articles/the-link-betwen-eds-and-pots
POTS Dysautonomia Cardiovascular Screening MCAS
AGA Clinical Practice Update – GI Manifestations in hEDS Research/Academic
https://pubmed.ncbi.nlm.nih.gov/40387691/
Gastrointestinal POTS Testing MCAS Testing Best Practice
Additional Supplementary Sources Research/Academic

The following symptom additions were supplemented based on current clinical literature and EDS specialist consensus:

Raynaud's Phenomenon Tinnitus Sleep Disorders Dental Manifestations Vocal Cord Issues Interstitial Cystitis Dyspraxia/DCD
Health Monitoring Recommendations ▼

An EDS diagnosis provides valuable clinical context that can guide proactive health monitoring. While hEDS itself is not life-threatening, awareness of associated conditions allows for earlier detection and intervention. Discuss these considerations with your healthcare providers.

Cardiovascular Monitoring

Connective tissue abnormalities can affect heart valves and blood vessels

🫀 Baseline Echocardiogram
Mitral valve prolapse occurs in ~7-20% of hEDS patients; mild aortic root dilation in ~15-20%. Most findings are mild and don't require intervention.
→ Consider baseline echo, especially with family history of cardiac issues or symptoms like palpitations
Sources: PMC – Cardiovascular Manifestations of hEDS, StatPearls
💓 POTS Screening
Approximately 80% of hEDS patients experience POTS symptoms. Diagnosis involves heart rate increase ≥30 bpm upon standing.
→ If experiencing dizziness, palpitations, or fainting, request tilt table test or active stand test
Sources: EDS Clinic – EDS and POTS, AGA Clinical Practice Update
🩺 Blood Pressure Monitoring
Labile blood pressure and orthostatic hypotension are common. Hypertension should be managed aggressively given vessel fragility.
→ Regular BP monitoring; consider home monitoring if symptomatic
Source: NCBI StatPearls – Ehlers-Danlos Syndrome

Gastrointestinal Monitoring

GI dysfunction is extremely common in hEDS and often underdiagnosed

🔬 Functional GI Disorders
IBS, GERD, gastroparesis, and dysmotility are frequently reported. Symptoms may be attributed to anxiety if EDS is unknown.
→ Consider gastric emptying study if early satiety/nausea; endoscopy if refractory GERD
Source: AGA Clinical Practice Update on GI Manifestations in hEDS
⚠️ Hiatal Hernia Risk
Connective tissue weakness increases hernia risk throughout the body, including hiatal hernias contributing to reflux.
→ Upper GI series or endoscopy if persistent reflux despite treatment
Source: EDS Clinic – Comorbid Conditions

Neurological & Mental Health

Both structural and functional neurological concerns occur at elevated rates

🧠 ADHD & Autism Screening
EDS patients are 7.4x more likely to be autistic and 5.6x more likely to have ADHD than the general population.
→ If experiencing attention, executive function, or social communication difficulties, consider neuropsychological evaluation
Sources: PMC – Joint Hypermobility Links Neurodivergence (Cederlöf 2016), PMC – Prevalence Study (Kindgren 2021)
💭 Anxiety & Depression
Elevated rates of anxiety disorders, depression, and health anxiety—often linked to chronic pain and diagnostic delays.
→ Mental health screening; consider therapy approaches that address chronic illness
Source: GeneReviews – Hypermobile EDS
😴 Sleep Disorders
Insomnia, sleep apnea, and unrefreshing sleep are common. Sleep issues compound fatigue and pain.
→ Sleep study if snoring, apnea witnessed, or persistent fatigue despite adequate sleep time
Source: GeneReviews – Hypermobile EDS
🤕 Craniocervical Considerations
A subset of patients experience craniocervical instability (CCI) or Chiari malformation. Symptoms include severe headaches, neurological deficits.
→ Upright MRI if severe positional headaches, numbness, or coordination changes
Source: EDS Clinic – Comorbid Conditions

Immune & Allergic Considerations

Mast cell activation and immune dysfunction are increasingly recognized

🔴 MCAS Screening
Mast Cell Activation Syndrome causes flushing, hives, GI upset, and multi-system reactions. Present in ~31% of those with both POTS and hEDS.
→ Serum tryptase during symptom flare vs. baseline; referral to allergist/immunologist if suspected
Sources: AGA Clinical Practice Update, EDS Society GP Toolkit
🦋 Thyroid Disorders
Hypothyroidism, hyperthyroidism, and Hashimoto's thyroiditis are frequently reported in EDS, exacerbating fatigue.
→ Thyroid panel (TSH, free T4, thyroid antibodies) if fatigue, temperature intolerance, or weight changes
Source: EDS Clinic – Comorbid Conditions

Musculoskeletal & Surgical Considerations

Tissue fragility affects injury risk, healing, and surgical planning

🦴 Early Osteoarthritis
Joint instability leads to accelerated wear. Degenerative changes may appear decades earlier than typical.
→ X-rays or MRI for persistent joint pain; physical therapy for joint protection
Source: GeneReviews – Hypermobile EDS
🏥 Surgical Planning
Tissue fragility, slow healing, and anesthesia resistance require special surgical considerations. Outcomes are generally good with proper precautions.
→ Always inform surgeons of EDS diagnosis; request experienced anesthesiologist
Source: NCBI StatPearls – Ehlers-Danlos Syndrome
🦷 Dental Considerations
Local anesthetics may wear off quickly or be ineffective. TMJ dysfunction, gum disease, and jaw subluxation are common.
→ Inform dentist of EDS; may need additional anesthetic; consider TMJ evaluation
Source: EDS Society GP Toolkit

Reproductive & Pelvic Health

Hormonal influences and pelvic floor dysfunction require specialized attention

🤰 Pregnancy Planning
Pregnancy is possible but considered higher risk. Premature rupture of membranes, rapid labor, and pelvic instability are more common.
→ Consult high-risk OB before conception; genetic counseling for inheritance discussion
Sources: EDS Society – Women with EDS, GeneReviews
🏋️ Pelvic Floor Therapy
Pelvic floor dysfunction, prolapse, and incontinence occur more frequently due to tissue laxity.
→ Pelvic floor PT referral, especially before/after pregnancy or if symptomatic
Source: Ehlers-Danlos News – Pelvic Health
📅 Menstrual Symptoms
Heavy bleeding (76%) and severe cramps (72%) are very common in women with hEDS; may worsen at puberty and with hormonal changes.
→ Gynecological evaluation; discuss hormonal management options
Source: Orphanet Journal – Gynecologic Symptoms in hEDS

Family Screening

Autosomal dominant inheritance means first-degree relatives have 50% risk

👨‍👩‍👧 Screen Family Members
Parents, siblings, and children of diagnosed individuals should be evaluated for subtle signs even without obvious symptoms.
→ Clinical evaluation of first-degree relatives; genetic counseling for family planning
Source: GeneReviews – Hypermobile EDS (50% transmission risk)
🧬 Genetic Testing Considerations
While hEDS has no identified gene, testing can rule out other EDS types (vascular, classical) with more serious implications.
→ Genetics referral if atypical features, arterial events, or significant family history
Sources: EDS Society – Genetics, MedlinePlus Genetics
Important Note These monitoring recommendations are based on clinical literature and expert consensus. Not all individuals with hEDS will develop these conditions. Work with your healthcare team to determine which screenings are appropriate for your specific situation and symptom profile.

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This tool is provided for informational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment.