Every week, I speak with patients who have spent years—sometimes decades—searching for answers. They’ve seen rheumatologists, neurologists, cardiologists, physical therapists, and more, trying to piece together a puzzle that no one provider seems to fully understand. Their symptoms are dismissed as anxiety, growing pains, or “just part of being flexible.” But the truth is often something far more complex: A connective tissue disorder like hypermobile Ehlers-Danlos syndrome (hEDS) or Hypermobility Spectrum Disorder (HSD).
And they are not rare.
Estimates suggest that approximately 1 in 500 to 1 in 900 people may be affected by HSD or hEDS—and likely many more, given how frequently these conditions go undiagnosed or misdiagnosed. Looking at the U.S. population, that translates to approximately half a million people—and that’s a conservative estimate. Yet most health care systems are not built to recognize or manage them. That needs to change. We need dedicated hypermobility clinics.
Why these conditions are so often overlooked
HSD and hEDS are multisystem disorders with symptoms that include joint instability, chronic pain, fatigue, gastrointestinal dysfunction, dysautonomia, and more. Because these symptoms span so many specialties, care is often fragmented and misdirected. Patients are bounced from provider to provider without a diagnosis or plan of care.
Meanwhile, their quality of life deteriorates. Driving may become impossible due to dizziness. Walking or even just standing causes pain and instability. Eating can trigger severe GI symptoms. Over time, many patients lose the ability to work, attend school, or care for themselves consistently. These are not sudden crises—they’re slow progressions that often begin in childhood and worsen steadily. Without early recognition and support, patients often end up on disability and reliant on Medicaid—not because they’ve given up, but because they were never given a fair shot.
What a hypermobility clinic could offer
A dedicated clinic would offer collaborative, trauma-informed care that addresses the full scope of symptoms. At minimum, it would include:
- Genetic counseling and evaluation
- Physical and occupational therapy with connective tissue expertise
- Cardiology, including echocardiograms to assess for aortic root dilation and mitral valve prolapse, and evaluation for dysautonomia (e.g., POTS)
- Gastroenterology and autonomic specialists for issues like gastroparesis, IBS, and temperature regulation
- Pain management and rehabilitation
- Mental health support that validates the trauma of chronic illness
This care model would not only validate patients—it would reduce ER visits, prevent unnecessary surgeries, and make long-term disability less likely.
Preventive care isn’t flashy—but it works.
This is not a glamorous investment. It doesn’t involve cutting-edge procedures or new tech. But it’s the kind of coordinated, preventive care that keeps people functioning. Early intervention, before a patient loses mobility or employment, can preserve function, autonomy, and hope.
From a public health standpoint, this is preventive care. And from a cost perspective, it’s smart. Coordinated, multidisciplinary care early on is far more effective—and less expensive—than decades of unmanaged chronic illness, emergency care, and disability benefits.
What we can do—now
We don’t need to reinvent the wheel. Some institutions have piloted connective tissue clinics. Smaller private practices, like mine, are working to fill the gap. But we need broader recognition—and support.
If you’re a clinician, administrator, or policymaker: This is your invitation to think bigger. And if you’re a patient: This is your reminder that your suffering isn’t invisible, and you deserve care that sees the whole picture.
It’s time to stop making these patients fight so hard for basic support.
It’s time to build hypermobility clinics.
Katharina Schwan is a genetic counselor.
