Managing Patients With Hypermobility Disorders: They’ve Seen You, but Have You Seen Them?, 2026, Mintken et al.

Chandelier

Senior Member (Voting Rights)
Managing Patients With Hypermobility Disorders: They’ve Seen You, but Have You Seen Them?

Mintken, Paul E.; Dommerholt, Jan; Francomano, Clair A.

Abstract
SYNOPSIS: Patients with hypermobility spectrum disorders (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS) frequently present to outpatient musculoskeletal practice.
Yet many physical therapists feel uncertain about how best to manage these complex conditions. Individuals often report years of recurrent sprains, joint subluxations, widespread pain, and fatigue, accompanied by normal imaging and inconsistent clinical explanations.
As a result, care may become fragmented, overly passive, or prematurely discontinued when pain persists.
Although high-quality randomized trials remain limited, international classification updates and emerging consensus provide sufficient direction to guide practice.
This editorial argues that a preparation gap exists in musculoskeletal physical therapy and outlines five principles for best-practice care: recognizing hypermobility as a multisystem condition, prioritizing education and validation, emphasizing active stabilization over passive strategies, accounting for altered pain processing and fatigue, and collaborating within a broader interdisciplinary framework.
Applying these principles shifts the focus from eliminating pain to restoring function, participation, and self-efficacy.
Patients with HSD or hEDS do not require rare-disease specialty clinics to improve; they require clinicians who are prepared to recognize their presentation and deliver thoughtful, evidence-informed care.
The responsibility now lies with individual practitioners, educators, and professional organizations to translate existing knowledge into everyday musculoskeletal practice.

Web | DOI | Journal of Orthopaedic & Sports Physical Therapy | Paywall
 

About the senior author:
Clair A. Francomano, MD is a medical geneticist with expertise in the hereditary disorders of connective tissue.
She currently serves as Professor in the Department of Medical and Molecular Genetics at Indiana University School of Medicine, where she directs the Ehlers-Danlos Society Center for Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders at IU Health.

Dr. Francomano is Chair of the Medical and Science Board for the Ehlers-Danlos Society and a member of the Steering Committee for the International Consortium on Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders.
Dr. Francomano has published over 150 articles in the peer-reviewed literature and has authored or edited five books.
Most recently she co-edited Symptomatic, a case-based handbook for the Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders.
 
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The Ehlers-Danlos Society website is heavily into the fringe folklore.

I don't understand a competent geneticist saying that people with EDS do not need to go to a rare disease speciality clinic. EDS is a rare disease that needs specialist advice.

Why is this an article for sports physios?
I‘m so confused.

Why would the Ehlers-Danlos Society push for fringe folklore that actively hurts pwEDS, as I learned recently thanks to this advocacy group:

Is there a rivaling EDS Society that is up to more good or is this completely left on the shoulders of advocacy groups run by pwEDS like the one linked above?
 
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