Building the Team and Infrastructure

What would it look like if people with Ehlers-Danlos Syndrome finally had a true medical home?

In this episode of Bendy Bodies, Dr. Linda Bluestein is joined by Dr. Ina Stephens and Dr. Dacre Knight to share the story behind the newly launched University of Virginia Ehlers-Danlos Syndrome Center, how it came to be, why it was urgently needed, and what makes it fundamentally different from traditional models of care.

The conversation explores the power of integrative, multidisciplinary care, the consequences of fragmented systems, and why early recognition, especially in pediatric patients, can profoundly change lifelong outcomes. Dr. Stephens and Dr. Knight discuss what patients can expect when seeking care at UVA, how research and clinical care are being built together, and why clinician education is essential to closing long-standing gaps in EDS care.

The episode also features a major announcement: a new collaboration between Bendy Bodies and the UVA EDS Center, uniting global patient education with academic medicine to help reshape how connective tissue disorders are understood, taught, and treated worldwide.

For anyone searching for what meaningful progress in EDS care could look like, this conversation offers a glimpse of what’s possible.

Takeaways:

EDS care is most effective when it’s coordinated, not scattered across disconnected specialties.

Early diagnosis, particularly in children, can prevent years of physical and emotional harm.

An “EDS home” model helps reduce gaslighting, burnout, and fragmented care.

Academic medicine is beginning to catch up, creating space for evidence-informed, compassionate treatment.

Education itself is a form of care, benefiting both patients and clinicians navigating complex conditions.

Find the episode transcript here.

Want to learn more about the UVA EDS Center?

For Appointments and Questions: RUVAEDSCenter@uvahealth.org

UVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic

UVA EDS FAQ: https://www.uvahealth.com/support/eds/faq

UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health

Want more Dr. Dacre Knight?

https://x.com/knidac

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