Each week, I converse with sufferers who’ve spent years—generally many years—looking for solutions. They’ve seen rheumatologists, neurologists, cardiologists, bodily therapists, and extra, attempting to piece collectively a puzzle that nobody supplier appears to totally perceive. Their signs are dismissed as nervousness, rising pains, or “simply a part of being versatile.” However the reality is commonly one thing much more complicated: A connective tissue dysfunction like hypermobile Ehlers-Danlos syndrome (hEDS) or Hypermobility Spectrum Dysfunction (HSD).
And they aren’t uncommon.
Estimates counsel that roughly 1 in 500 to 1 in 900 individuals could also be affected by HSD or hEDS—and certain many extra, given how ceaselessly these circumstances go undiagnosed or misdiagnosed. Trying on the U.S. inhabitants, that interprets to roughly half one million individuals—and that’s a conservative estimate. But most well being care methods will not be constructed to acknowledge or handle them. That should change. We want devoted hypermobility clinics.
Why these circumstances are so typically ignored
HSD and hEDS are multisystem problems with signs that embody joint instability, power ache, fatigue, gastrointestinal dysfunction, dysautonomia, and extra. As a result of these signs span so many specialties, care is commonly fragmented and misdirected. Sufferers are bounced from supplier to supplier with no analysis or plan of care.
In the meantime, their high quality of life deteriorates. Driving might grow to be unattainable as a consequence of dizziness. Strolling and even simply standing causes ache and instability. Consuming can set off extreme GI signs. Over time, many sufferers lose the power to work, attend faculty, or look after themselves constantly. These will not be sudden crises—they’re gradual progressions that usually start in childhood and worsen steadily. With out early recognition and assist, sufferers typically find yourself on incapacity and reliant on Medicaid—not as a result of they’ve given up, however as a result of they had been by no means given a good shot.
What a hypermobility clinic might supply
A devoted clinic would supply collaborative, trauma-informed care that addresses the complete scope of signs. At minimal, it will embody:
- Genetic counseling and analysis
- Bodily and occupational remedy with connective tissue experience
- Cardiology, together with echocardiograms to evaluate for aortic root dilation and mitral valve prolapse, and analysis for dysautonomia (e.g., POTS)
- Gastroenterology and autonomic specialists for points like gastroparesis, IBS, and temperature regulation
- Ache administration and rehabilitation
- Psychological well being assist that validates the trauma of power sickness
This care mannequin wouldn’t solely validate sufferers—it will scale back ER visits, forestall pointless surgical procedures, and make long-term incapacity much less probably.
Preventive care isn’t flashy—but it surely works.
This isn’t a glamorous funding. It doesn’t contain cutting-edge procedures or new tech. Nevertheless it’s the form of coordinated, preventive care that retains individuals functioning. Early intervention, earlier than a affected person loses mobility or employment, can protect operate, autonomy, and hope.
From a public well being standpoint, that is preventive care. And from a value perspective, it’s good. Coordinated, multidisciplinary care early on is way more practical—and cheaper—than many years of unmanaged power sickness, emergency care, and incapacity advantages.
What we are able to do—now
We don’t must reinvent the wheel. Some establishments have piloted connective tissue clinics. Smaller non-public practices, like mine, are working to fill the hole. However we’d like broader recognition—and assist.
When you’re a clinician, administrator, or policymaker: That is your invitation to assume larger. And if you happen to’re a affected person: That is your reminder that your struggling isn’t invisible, and also you deserve care that sees the entire image.
It’s time to cease making these sufferers battle so exhausting for primary assist.
It’s time to construct hypermobility clinics.
Katharina Schwan is a genetic counselor.
