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Research- Largest Global study hEDS HSD (hypermobility)

Defining the chronic complexities of hEDS and HSD : A Global Survey of Diagnostic challenges, Life long comorbidities and UNMET needs
Defining the chronic complexities of hEDS and HSD : A Global Survey of Diagnostic challenges, Life long comorbidities and UNMET needs

A groundbreaking international survey sheds light on the hidden struggles of thousands living with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders


If you've ever felt like your hypermobile Ehlers-Danlos syndrome (hEDS) or hypermobility spectrum disorder (HSD) affects every part of your body we know you're not alone. A comprehensive new study published in the Journal of Clinical Medicine analysed responses from over 5,600 people across the globe, creating the most detailed picture yet of what it's really like to live with these complex conditions.


Huge numbers !

This wasn't just another small clinical study. Researchers gathered data from 5,653 participants across every continent (except Antarctica), with 3,360 people with hEDS and 546 with HSD sharing their experiences. What they found challenges many assumptions about these supposedly "rare" conditions and reveals a healthcare crisis hiding in plain sight.


Misdiagnosis or Misattributed

Over half of participants were misdiagnosed with conditions like fibromyalgia, anxiety, or told their pain was just "growing pains" before finally getting the right diagnosis. We're talking about years sometimes over a decade of being told their very real symptoms were in their head or something else entirely.


The study found that while symptoms often begin in adolescence, the journey to diagnosis is long and winding. First suspicions usually came from medical doctors, physical therapists or sometimes patients and their families doing their own research. But getting from suspicion to confirmation? That's where the system often fails.


Here's a statistic that might make you feel seen: hEDS participants averaged 6.5 medical specialists per year. Many people spend more than 5 hours every week just coordinating their care. Think about that—it's like having a part-time job managing your health conditions.


The most frequently visited specialists included family medicine doctors, cardiologists, gastroenterologists, neurologists and unfortunately, emergency medicine physicians. Nearly 42% of people with hEDS had been hospitalised for their condition or related complications.


PAIN

Chronic pain was ranked as the most severe symptom by both hEDS (32.6%) and HSD (34.2%) participants. But here's what's particularly striking: 98.8% of people with hEDS experience chronic pain. The most affected areas? Neck (79.9%), lower back (77.9%), and shoulders (76.7%).

What's equally concerning is how poorly conventional pain medications work for this population. The study found that traditional treatments like NSAIDs, antidepressants, and anticonvulsants largely fail these patients.

One of the most validating aspects of this study is it shows that it is multisystemic


POTS (Postural Orthostatic syndrome) was extraordinarily elevated in the hEDS group compared to the general population. The dysautonomia symptoms were profound and debilitating: chronic fatigue, dizziness and brain fog were the most highly reported symptoms, with chronic fatigue being a particularly significant aspect of the autonomic dysfunction.


Heart palpitations and temperature regulation problems were also frequent complaints, painting a picture of widespread autonomic nervous system involvement.


The Gut Connection

Gastrointestinal issues (GI)were major players, with irritable bowel syndrome being the most commonly diagnosed GI condition. People with hEDS showed 1.5 times higher risk of GERD (GORD in UK) than both HSD patients and the general population. Some participants required feeding tubes and other interventions for severe GI dysfunction.


Brain and Nervous System

The neurological findings were extensive. Beyond the expected issues like herniated disks and spinal problems, the study documented significantly higher rates of conditions like small-fiber neuropathy, Chiari malformation, and tethered cord syndrome in the hEDS group.


Neurodivergence: Confirming Earlier Research

Building on important earlier work by researchers like Cederlöf et a(2015) and Dr. Eccles' (our Patron) team (Csecs et al2022), this study provides large-scale confirmation of the established connections between hypermobility and neurodivergence. ADHD, Autism and OCD were all significantly more common in people with hEDS compared to the general population. Rather than being a surprise, these findings validate what previous research had already begun to establish about the important connections between connective tissue disorders and neurodevelopment and why we were founded at SEDSConnective. (Language can confuse many at times and we are glad to help in the future where able on neurodivergence)


Mental Health:

The study found elevated rates of anxiety, depression and sleep disorders but this isn't simply about "coping" with a chronic illness. The researchers documented specific patterns showing these aren't just reactive mental health issues but may be part of the underlying condition itself.


The Treatment Gap

Perhaps one of the most concerning findings is the treatment gap. Nearly half (49.4%) of hEDS patients experienced complications with anesthesia, making medical procedures risky. They were over twice as likely to experience problems like insufficient pain control, shortened anesthetic effects, and even anaphylaxis.

With conventional medicine often failing them, 85% of participants turned to alternative approaches massage, allied professionals, meditation and acupuncture topped the list. While these shouldn't replace medical care, the high usage rates suggest people are desperately seeking relief wherever they can find it.


Connections

One of the study's most important contributions was mapping how different conditions cluster together. The researchers found strong patterns of co-occurrence, particularly between:

  • Anxiety and depression (43.3% overlap)

  • Anxiety and allergies (39.3% overlap)

  • Depression and allergies (37.2% overlap)

This clustering suggests shared underlying mechanisms and explains why treating isolated symptoms often fails everything is connected.



Validation!

This study validates what patients have been saying for years: hEDS and HSD are complex, multisystem conditions that require comprehensive, coordinated care. The findings suggest these conditions are much more common than previously recognised and likely underdiagnosed in many populations.

For healthcare providers, this data provides a roadmap for better recognition and management.

The study highlights the need for:

  • Earlier recognition and diagnosis

  • Multidisciplinary care teams

  • Alternative pain management approaches

  • Understanding of the neurodivergent connections

  • Recognition that conventional treatments often don't work

For patients, this research offers something invaluable: validation. The symptoms are real, the experiences are shared by thousands of others and the complexity our members and followers feel isn't in your imagination , it's documented, measurable and finally being taken seriously by the medical community. We knew anecdotally as a user led charity we were needed to pioneer aspects of this but the research data had to be there.


Future

While this study paints a challenging picture, it also represents hope. It was an adult only study so hopefully in the future there will be more data for children and young people who are still pidgeon holed into stereotypical silos. However, by documenting the full scope of these conditions with such detail and rigor, researchers are building the foundation for better diagnostic criteria, more effective treatments and ultimately better lives for people with hEDS and HSD.


Not Rare

The data is clear: these are NOT rare conditions affecting just joints. They're common, complex, multisystem disorders that deserve recognition, research, and resources proportional to their impact on patients' lives. We are delighted at SEDSConnective that this study undertaken by the Norris Lab has been published. We do believe that our community voice still needs to be there for future health, education, care, work, policy and quality of life.


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