Medically reviewed by Assoc. Prof. Dr. Alan Hakim, MD MA FRCP · June 2026 · Source: ehlers-danlos.com
Hypermobile Ehlers-Danlos syndrome (hEDS) is a heritable connective tissue disorder that causes generalized joint hypermobility, joint instability, and chronic pain. It is also associated with a range of other symptoms and related conditions that affect many different areas of the body.
hEDS is the most common type of EDS, accounting for approximately 90% of all EDS cases. It is the only one of the 13 EDS types that currently has no identified genetic cause and no confirmable genetic test. Diagnosis requires a clinical evaluation against a three-part criteria framework established in 2017.
hEDS is one of the most underdiagnosed conditions in medicine. The average time from first symptoms to correct diagnosis is 10 to 12 years, with an average of 10 misdiagnoses along the way.
~90%
Of all EDS cases are hEDS
10–12 yrs
Average time from first symptoms to correct diagnosis
10
Average number of misdiagnoses before correct diagnosis
Source: ehlers-danlos.com/heds/ · ehlers-danlos.com/prevalence/
hEDS may be suspected when a person has some or all of the following primary features. hEDS can present in different ways from person to person, even within the same family, but patterns of similar concerns are recognized within groups of people with hEDS — typically musculoskeletal with pain and fatigue versus a multi-system condition with multiple comorbidities.
Primary Features
Also Associated With
Phenotypic variability
Two people with hEDS may have very different symptom profiles. One person may be most affected by joint instability and pain, while another's primary burden is fatigue, dysautonomia, or gastrointestinal dysfunction. The Ehlers-Danlos Society illustrates this variability across eight symptom domains: joint instability, MCAS, pain, fatigue, GI issues, dysautonomia, headaches, and anxiety.
Source: ehlers-danlos.com/heds/
Because hEDS affects connective tissue throughout the body, symptoms can involve multiple systems simultaneously. The condition is systemic — not limited to joints and skin.
Musculoskeletal
Skin
Autonomic & Cardiovascular
Other Frequently Associated
Source: ehlers-danlos.com/heds/ · ehlers-danlos.com — clinical description
The cause or causes of hEDS have not been identified. The Ehlers-Danlos Society states: "At present, no single gene mutation causing hEDS has been identified. hEDS is likely to be caused by many different genetic changes." This distinguishes hEDS from all other EDS types, 12 of which have known genetic mutations that can be confirmed by testing.
Inheritance pattern
hEDS appears to follow an autosomal dominant inheritance pattern based on family histories — meaning a person with hEDS has approximately a 50% chance of passing the condition on to each child. The Ehlers-Danlos Society notes that "inheritance is somewhat difficult to analyze, as hEDS may be mild during much of life or may even appear to 'skip' a generation."
What research is underway
The HEDGE Study — the Hypermobile Ehlers-Danlos Genetic Evaluation Study — sequenced the DNA of over 1,000 participants from 86 countries. Key finding: no single gene explains hEDS or HSD. The findings point to multiple rare genetic variants and complex interactions. A considerable effort is also underway in proteomics and metabolomics to identify biomarkers that explain the cause of hEDS and/or provide insights into novel treatments.
Source: ehlers-danlos.com/heds/ · ehlers-danlos.com/genetics-and-inheritance/ · ehlers-danlos.com/the-hedge-study/
hEDS occurs across all racial, ethnic, and geographic groups. The true prevalence is not fully known and is likely underestimated due to underdiagnosis and misdiagnosis.
Hypermobile EDS affects people of all genders, races, and ethnicities. A perceived excess of female patients is documented, which the Ehlers-Danlos Society notes may be related to the influence of sex hormones on joint hypermobility.
Source: ehlers-danlos.com/prevalence/
If you believe you may have hEDS, the next step is a clinical evaluation with a physician knowledgeable in connective tissue disorders. Because hEDS has no genetic test, the evaluation requires a thorough history and physical examination against the 2017 three-part criteria. EDS Connective facilitates online diagnostic evaluations for hEDS and HSD via independent, board-certified physicians in all 50 states, no referral needed.
Medically reviewed by
Assoc. Prof. Dr. Alan Hakim, MD MA FRCP
Medicine & Rheumatology. Biobank and DICE Registry Principal Investigator and Medical & Scientific Board Member, The Ehlers-Danlos Society · Member of the Steering Committee of The International Consortium on the Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders
Last reviewed: June 2026 · All clinical content sourced from ehlers-danlos.com
Still searching for an hEDS or HSD diagnosis? EDS Connective facilitates online diagnostic evaluations through independent, board-certified physicians in our provider network — nationwide, no referral needed.
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This page has been reviewed for medical accuracy by Assoc. Prof. Dr. Alan Hakim, MD MA FRCP. Dr. Hakim's review is limited to the accuracy of the educational content presented. It does not constitute individualized medical advice, does not create a provider-patient relationship with any reader, and does not constitute an endorsement of EDS Connective, its platform, or its commercial services.
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