How Common Are hEDS and Hypermobility Spectrum Disorder?

Currently, there is no universally agreed-upon population prevalence for hypermobile Ehlers-Danlos syndrome (hEDS) or hypermobility spectrum disorder (HSD) ^[1]. You will likely encounter widely different numbers depending on whether a study looked at medical records, population screening, or specialty clinics.

A U.S. analysis of electronic health records found that roughly 1 in 800 patients (about 0.125%) had a formal hEDS code ^[2]. Meanwhile, a national health record study in Wales found a combined recorded prevalence of EDS and Joint Hypermobility Syndrome (an older term) of roughly 0.19% ^[3]. However, clinical screening studies suggest the true number of people living with hEDS or HSD is likely higher than what official medical records capture ^[1][2].

If you have tried researching how common these conditions are, the contradictory statistics can be frustrating. Here is a breakdown of why these estimates vary so much across the medical literature:

Different Measurements Tell Different Stories

Confusing a Physical Trait with a Diagnosis

Many studies measure Generalized Joint Hypermobility (GJH), which is the physical trait of having joints that move beyond typical limits ^[1]. Research suggests that roughly 9.5% of females and 5.2% of males in the general population have GJH ^[1]. However, having bendy joints is not a disease by itself ^[4]. Often, online articles incorrectly use the high prevalence of GJH to describe the prevalence of hEDS or HSD ^[1].

Changing Terminology and Stricter Criteria

In 2017, the international diagnostic criteria for hypermobility syndromes were revised ^[7]. Previously, patients might have been diagnosed with terms like Joint Hypermobility Syndrome (JHS) or Ehlers-Danlos Syndrome hypermobility type (EDS-HT) ^[7]. The 2017 update introduced more narrow criteria for hEDS ^[8]. To be diagnosed with hEDS, a person must meet a specific combination of criteria including generalized joint hypermobility, defined systemic or family history features, and musculoskeletal complications—along with the mandatory exclusion of alternative diagnoses ^[5].

Patients who have symptomatic joint hypermobility but do not meet the full combination of features for hEDS, and who do not have another condition explaining their symptoms, may be diagnosed with HSD ^[5][9]. HSD is a valid clinical diagnosis that can be just as painful and disabling as hEDS; it is not a “lesser” condition ^[8].

Because the hEDS criteria are now more restrictive, older prevalence statistics cannot simply be relabeled as hEDS ^[10]. In one specific clinic cohort of patients previously diagnosed under older Villefranche criteria, only 15% met the revised 2017 criteria for hEDS ^[10].

Diagnostic Thresholds: Age, Sex, and Measurement Limitations

Hypermobility naturally decreases as people age ^[11]. Doctors typically use the Beighton score (a 9-point scale measuring joint flexibility), but this scale only tests selected joints ^[11]. To account for aging, the 2017 hEDS criteria use age-specific thresholds ^[11]. Because the Beighton score does not capture every clinically important area, clinicians can also use a 5-part historical questionnaire to capture past flexibility, injuries, or surgeries ^[12]. Different epidemiological studies use different cutoffs or measurement methods, which can affect comparability across populations and skew prevalence statistics ^[11].

Medical Records vs. Population Screening

There may be a substantial gap between the number of people who have hEDS or HSD and the number of people who are formally diagnosed in health systems. A 2025 systematic review found only one study evaluating adults in the general population; it estimated that up to 38-39% of people might meet criteria for HSD, and up to 2% of women for hEDS ^[1]. However, researchers emphasize that this is a single study and should not be treated as a definitive or representative population rate ^[1]. Medical records show much lower rates, potentially due to variations in coding practices, access to specialized care, diagnostic awareness, and whether HSD is coded at all ^[2][3].

Referral and Selection Bias

You may read statistics stating that hEDS accounts for roughly 18% to 20% of patients ^[5][6]. However, these numbers come from specialty connective tissue clinics ^[5][6]. Patients in these clinics have already been referred to specialists because they have complex symptoms ^[13]. Therefore, the demographics of a specialty clinic do not represent the general population risk ^[5][13].

What This Means For You

A population statistic cannot confirm or refute an individual’s diagnosis. Because hEDS currently has no single confirmatory genetic test, clinicians rely on your personal medical history, family history, and physical examination rather than population statistics to make a diagnosis ^[5]. Both hEDS and HSD can cause substantial disability and require comprehensive, symptom-based care ^[8]. Ultimately, your medical management should be guided by your specific symptoms and functional needs, rather than whichever prevalence statistic happens to be largest.