Every week, I engage with patients who have invested years—sometimes even decades—seeking answers. They’ve consulted rheumatologists, neurologists, cardiologists, physical therapists, and others, attempting to piece together a puzzle that no single provider seems to completely comprehend. Their symptoms are often brushed off as anxiety, growing pains, or merely “just a part of being flexible.” However, the reality is frequently much more intricate: a connective tissue disorder such as hypermobile Ehlers-Danlos syndrome (hEDS) or Hypermobility Spectrum Disorder (HSD).
And they are not uncommon.
Estimates indicate that around 1 in 500 to 1 in 900 individuals may suffer from HSD or hEDS—and likely many more, considering how often these disorders remain undiagnosed or misdiagnosed. When considering the U.S. population, this equates to roughly half a million individuals—and that’s a conservative figure. Yet, the majority of healthcare systems are ill-equipped to identify or manage these conditions. This must change. We require specialized hypermobility clinics.
Why these conditions are frequently ignored
HSD and hEDS are multisystem disorders with symptoms that encompass joint instability, chronic pain, fatigue, gastrointestinal issues, dysautonomia, and more. As these symptoms cover various specialties, care is frequently fractured and misdirected. Patients are shuffled from one provider to another without obtaining a diagnosis or a care plan.
In the meantime, their quality of life declines. Driving may become unfeasible due to dizziness. Walking or merely standing can induce pain and instability. Eating may provoke severe gastrointestinal symptoms. Gradually, many patients are unable to work, attend school, or consistently care for themselves. These are not abrupt crises—they’re gradual developments that often commence in childhood and steadily exacerbate. Without timely identification and support, patients frequently find themselves on disability and dependent on Medicaid—not due to surrender, but because they were never afforded an equitable chance.
What a hypermobility clinic could provide
A specialized clinic would deliver collaborative, trauma-informed care that tackles the complete range of symptoms. At the very least, it would encompass:
– Genetic counseling and assessment
– Physical and occupational therapy with expertise in connective tissue
– Cardiology, including echocardiograms to evaluate for aortic root dilation and mitral valve prolapse, along with assessment for dysautonomia (e.g., POTS)
– Gastroenterology and autonomic experts for conditions such as gastroparesis, IBS, and temperature regulation
– Pain management and rehabilitation
– Mental health support that acknowledges the trauma associated with chronic illness
This model of care would not only affirm patients—it would lessen ER visits, avert unnecessary surgeries, and decrease the likelihood of long-term disability.
Preventive care may not be glamorous—but it is effective.
This isn’t a flashy investment. It doesn’t involve leading-edge interventions or advanced technology. Yet, it represents the kind of coordinated, preventive care that enables individuals to function. Early intervention, prior to a patient losing mobility or job security, can maintain function, independence, and optimism.
From a public health viewpoint, this constitutes preventive care. And from a financial standpoint, it’s sound. Coordinated, multidisciplinary care initiated early is significantly more efficient—and less costly—than prolonged spans of unmanaged chronic illness, emergency services, and disability benefits.
What we can do—immediately
We don’t need to reinvent the wheel. Some institutions have launched connective tissue clinics. Smaller private practices, such as mine, are striving to bridge the gap. Yet, we require wider acknowledgment—and support.
If you are a clinician, administrator, or policymaker: This is your call to think on a larger scale. And if you are a patient: This is your reminder that your pain isn’t unseen, and you deserve care that recognizes the whole picture.
It’s time to cease forcing these patients to struggle so intensely for fundamental support.
It’s time to establish hypermobility clinics.
Katharina Schwan is a genetic counselor.