hEDS Lunch & Learn: Rethinking hEDS in Everyday Practice

The Norris Lab
Mar 25
1 min read

Our lunch & learn, “Is it Really That Rare? Rethinking hEDS in Everyday Practice,” brought together a room full of future clinicians ready to improve how Ehlers-Danlos syndrome is understood and treated.

Dr. Norris introduced the Ehlers-Danlos syndromes, a group of connective tissue disorders that share the feature of joint hypermobility, skin hyperextensibility, and tissue fragility. The subtypes have distinct features and are separated both phenotypically and genetically, and are generall viewed as disorders of the extracellular matrix or collagen.

All types except for the hypermobile subtype have known genetic markers, and most are considered rare diseases. However, recent estimates have found that hypermobile EDS and its sister condition, hypermobility spectrum disorder, may be as common as 1 in 500 people.

Hypermobile EDS is more prevalent in those assigned female at birth and has a wide spectrum of severity. On average, patients wait over 22 years for an accurate diagnosis, and 86% of patients have worse medical outcomes because of this diagnostic delay alongside limited medical education on EDS.

A heartfelt thank you to Victoria Daylor, former Norris Lab clinical coordinator and now medical student, for making this happen. Victoria recognized what so many in the EDS community already know: better education starts in medical school, and she and Dr. Norris did something about it.

Thank you to Dr. Cortney Gensmer, Molly Griggs, and MD/PhD student Roman Fenner for serving on the patient panel during this seminar and talking about the power of patient-science.