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Differences between EDS, HSD, and GJH and their Prevalence

Writer's picture: Ines IllipseInes Illipse

For many people, being extra flexible or having occasional joint pain might seem harmless, maybe even a bit quirky. But for those with connective tissue disorders like Ehlers-Danlos Syndrome (EDS), Hypermobility Spectrum Disorder (HSD), and General Joint Hypermobility (GJH), these traits are often just the tip of the iceberg. Living with these heritable conditions means navigating an array of musculoskeletal, cardiovascular, and even digestive challenges that can deeply affect quality of life.


The good news? Research and awareness are growing, helping us understand and manage these conditions more effectively. Let's dive into what these disorders are, the latest research, and how we can support those who live with them every day.


What Are EDS, HSD, and GJH?


These three terms—EDS, HSD, and GJH—represent related but distinct connective tissue disorders. Here’s a closer look at each:


Generalized Joint Hypermobility (GJH)

GJH refers to the ability of joints to extend beyond the normal range of motion. It’s common in around 10-20% of adults and up to 34% of children. Some people with GJH are asymptomatic, often able to compensate with muscle strength or joint stability, however, they can become symptomatic with age or after experiencing a traumatic event or injury. In others who are symptomatic, GJH may lead to pain, instability, or even early onset of arthritis later in life.


Ehlers-Danlos Syndrome (EDS)

EDS is a group of inherited disorders affecting connective tissues—primarily the skin, joints, and blood vessels. People with EDS may have very flexible joints and skin that stretches or bruises easily. There are multiple types of EDS, including the common hypermobile EDS (hEDS) and the more severe vascular type, which can lead to fragile blood vessels and increased risk of rupture. Beyond physical symptoms, EDS can also bring chronic pain, digestive issues, anxiety, and autonomic nervous system challenges. Knowing the specific type is essential for tailored management and care.


Hypermobility Spectrum Disorder (HSD)

HSD is characterized by generalized joint hypermobility along with related symptoms but doesn’t meet all criteria for diagnosing EDS. Once thought to be a milder form of hypermobility, HSD’s impact can be just as severe as some forms of EDS. Recent research underscores the importance of early diagnosis and care, as timely intervention can significantly improve symptom management and quality of life.



New Insights: How Common Are EDS and HSD?


A groundbreaking study from Swansea and Cardiff universities, published in BMJ Open in 2019, suggests that hypermobile EDS (hEDS) and HSD may be far more common than previously thought. Researchers reviewed 27 years of GP and hospital records in Wales and found that 1 in 500 people is diagnosed with either EDS or HSD—ten times higher than prior estimates of 1 in 5,000. This means that awareness and recognition of these disorders in the medical community are growing, enabling more individuals to receive timely diagnosis and care.

Dr. Emma Reinhold, a primary care advisor for EDS UK who contributed to this research, emphasized the need to transition EDS from being seen as a rare disease to one that deserves mainstream recognition. She highlights that EDS and HSD are often associated with a variety of health issues affecting the entire body, from cardiovascular to gastrointestinal, underscoring their complex and far-reaching nature.



Prevalence and Statistics: Who’s Affected?


To understand the prevalence and reach of these conditions, here are some key statistics:


  • Generalized Hypermobility: Affects about 10-20% of adults and 34% of children.

  • EDS and HSD: Roughly 0.2% of the population, or about 1 in 500 people, is affected.

  • Clinical Presentation: Studies show that up to 37% of patients seen in rheumatology clinics and 39% in pain clinics exhibit hypermobility.


More recent research in the U.S. suggests that symptomatic joint hypermobility syndromes, including EDS, occur in approximately 0.75-2% of the population. This would mean up to ten million people, with 80-90% of cases attributed to hypermobile EDS (hEDS). As such, hEDS is likely one of the most common inherited connective tissue disorders worldwide, with women affected more often than men at a ratio of about 3:1.

These numbers paint a clear picture: connective tissue disorders are not as rare as once believed. With early recognition, those affected can better manage symptoms and reduce the risk of complications.


Recognizing Symptoms and Getting Diagnosed


For many patients, the journey to an EDS or HSD diagnosis can be long and frustrating. Symptoms often start as vague or seemingly unrelated issues: joint pain, recurring injuries, unusual fatigue, or even unexplained digestive symptoms. Traditional diagnostic tools, like the Beighton score, have long been used to measure hypermobility but may overlook key signs, especially in lower and upper limb joints. Newer tools like the Lower Limb Assessment Score and Upper Limb Hypermobility Assessment Tool offer a broader assessment, helping capture the full spectrum of hypermobility symptoms.


In any case, many specialists suggest that the distinction between hEDS and HSD is not necessarily relevant to how management should be approached and that the same considerations can be applied.


Dispelling Myths and Building Awareness


There are still plenty of misconceptions surrounding EDS and HSD. Many people may think it’s “just being flexible” or “not a big deal.” These misunderstandings not only downplay the real challenges but also hinder broader recognition and research funding. Shifting public perception of EDS and HSD—from rare curiosities to complex, impactful conditions—is key to achieving better support, awareness, and care.


Conclusion: A Path Toward Better Care and Awareness


As awareness of EDS and HSD grows, so does our potential for better understanding, management, and support. With every new study and each individual willing to share their story, the EDS and HSD community gains visibility and strength. Whether you’re a patient, caregiver, healthcare provider, or just someone eager to learn more, every step we take in the direction of knowledge and compassion makes a difference.


That is why at ParaMotion, we take this condition seriously and address it with a multisystemic approach to help patients reach the best results possible.


Join our waitlist today or book a 1-1 consultation so we can help you with your symptoms.


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