Hypermobility Disorders Deserve Dedicated Care
Estimates suggest 1 in 500 to 1 in 900 people have hypermobile Ehlers-Danlos syndrome (hEDS) or Hypermobility Spectrum Disorder (HSD). In the U.S., that is at least half a million people. Given how frequently these conditions go unrecognized, that number is almost certainly an undercount.
Here is what that looks like in practice.
She was the flexible kid. Her joints bent in ways that looked unusual but no one flagged it as anything. Growing pains through her teens, fatigue that did not have an obvious cause, sprains that happened without much force. She was told she was deconditioned. That some people were just prone to injury.
By her twenties she had added GI symptoms to the list. Bloating, nausea, foods she could no longer tolerate. Normal results on every test. Standing up started causing dizziness. She began planning her days around how she felt. Work became harder to sustain.
She was 34 when she came to me. She had a folder of normal test results and no answers.
Why these conditions keep getting missed
hEDS and HSD are multisystem disorders. Joint instability, chronic pain, fatigue, GI dysfunction, dysautonomia. Because the symptoms cross so many specialties, care ends up fragmented. Patients get bounced from provider to provider with no one connecting the dots.
The progression is slow and it often starts in childhood. By the time patients reach me, many have been managing this for 10 to 15 years without a name for it.
What coordinated care would change
A real hypermobility clinic addresses the full picture. Genetic counseling and evaluation, physical and occupational therapy with connective tissue expertise, cardiology, GI and autonomic specialists, pain management, and mental health support. Coordinated. Trauma-informed. Treating the patient as someone with a real diagnosis, not a collection of unexplained complaints.
The goal is early intervention, before a patient loses mobility, employment, or both. That is a public health argument as much as a clinical one. Patients with undiagnosed hEDS accumulate upwards of $21,000 above baseline in medical costs per year. Coordinated preventive care early on is less expensive than decades of unmanaged chronic illness, unnecessary procedures, and disability.
Where things stand
UVA Health recently opened an EDS and Hypermobility Disorders Center in Charlottesville, Virginia. Multidisciplinary team, genetic counselors included, seeing both adults and children. It is exactly the model this population needs.
It is also one clinic. A handful of other institutions have piloted similar programs. Solo and small practices are filling in around the edges. The gap between what exists and what is needed is still large. The patients are already there.
Sources
Forghani, I., See, J., & McGonigle, W. C. (2025). Hypermobile Ehlers-Danlos syndrome: Diagnostic challenges and the role of genetic testing. Genes, 16(5), 530. https://doi.org/10.3390/genes16050530
Schubart, J. R., Schaefer, E. W., Knight, D. R. T., Mills, S. E., & Francomano, C. A. (2024). Estimates of the excess cost burden of Ehlers-Danlos syndromes: A United States MarketScan® claims database analysis. Frontiers in Public Health, 12, 1365712. https://doi.org/10.3389/fpubh.2024.1365712
