New Global Research Confirms What We Already Knew:

The Burden of hEDS and HSD is Heavy.

 

A major new international study has highlighted the realities of living with hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD). Despite affecting as many as one in 500 people, these conditions remain poorly understood, frequently misdiagnosed, and under-recognised in health systems around the world (participants from Australian and New Zealand were represented in this study).

The Long Road to Diagnosis

The survey, which included almost 4,000 participants globally, revealed that people with hEDS wait an average of 22 years for a correct diagnosis. For those with HSD, the delay was slightly shorter at 17 years.

Most participants first experienced symptoms in childhood or adolescence; joint pain, digestive problems, or fainting were common early signs. Many could identify a clear trigger for symptoms onset, or worsening; often viral, environmental, or hormonal (as in the case of puberty and pregnancy). Yet many were mislabelled with conditions such as fibromyalgia, anxiety, or “growing pains” before receiving an accurate diagnosis.

A Multisystem Condition

The research confirms what many people with lived experience already know: hEDS and HSD are far more than “joint problems.” They impact multiple body systems and bring with them a heavy burden of other health conditions.

• Chronic pain was almost universal (~98% of participants).
• People with hEDS lived with, on average, 24 additional health conditions, while those with HSD reported 17.
• Common complications included:
• Gastrointestinal disorders such as irritable bowel syndrome, reflux, and gastroparesis.
• Dysautonomia, including postural orthostatic tachycardia syndrome (POTS).
• Neurological conditions, like migraines, nerve pain, and spinal instability.
• Orthopaedic issues, including frequent dislocations, subluxations, and tendon injuries.

The study also reported a high rate of anaesthesia-related complications, making surgery, dental work, and other medical procedures riskier for this group.

The Human Cost

The burden of hEDS and HSD extends well beyond the symptoms themselves. Many participants reported spending 5–10 hours each week organising their health care, including appointments, referrals, and insurance (for Australian’s this would be Medicare, Private Health Insurance and / or NDIS).

They frequently needed to see multiple specialists across different fields, and in some cases travelled more than 3,000 kilometres for appropriate care.

Financial strain was another key theme. More than half of participants reported paying significant out-of-pocket costs because specialised care was unavailable through public systems or not covered by private health insurance.

This level of burden has serious consequences for quality of life. Chronic pain, fatigue, and brain fog were consistently ranked as the most disabling symptoms, with wide-reaching effects on education, employment, family, and community participation.

What This Means for the Future

The findings challenge the outdated view that hEDS and HSD are rare or minor conditions. Instead, they are common, complex, and systemic illnesses that require early recognition, coordinated care, and investment in research.

The study authors recommend:

• Updated, evidence-based diagnostic frameworks.
• More research into the immune, neurological, and autonomic drivers of disease.
• Stronger awareness and education for health professionals to shorten the diagnostic delay and reduce misdiagnoses.

Why This Matters in Australia

For Australians living with hEDS and HSD, these results echo local experiences: years waiting for recognition, fragmented care, and limited access to specialist pathways. With prevalence sitting somewhere between “common” and “rare,” the need for investment is urgent.

Specialised clinics, targeted health professional education, and stronger patient support services would make a profound difference to the lives of thousands of Australians with HSD or hEDS.

Reference:

Daylor V, Griggs M, Weintraub A, Byrd R, Petrucci T, Huff M, et al. Defining the Chronic Complexities of hEDS and HSD: A Global Survey of Diagnostic Challenges, Life-Long Comorbidities, and Unmet Needs. J Clin Med. 2025;14(16):5636. doi:10.3390/jcm14165636