09/22/2025
We are excited to share a new paper published yesterday: 'Proteomic discoveries in hypermobile Ehlers–Danlos syndrome reveal insights into disease pathophysiology' by Griggs M, Gensemer C Cortney Gensemer, PhD, et al. (ImmunoHorizons, 2025; 9(10): vlaf044), https://academic.oup.com/immunohorizons/article/9/10/vlaf044/8256436
The study asked whether proteins circulating in blood could reveal hidden processes that drive hypermobile Ehlers-Danlos syndrome (hEDS). Using cutting-edge techniques, the team measured hundreds of proteins and chemical messengers at once.
By comparing blood serum from 29 women with hEDS to 29 age-matched women without the condition, and then confirming the results in an expanded validation group of 41 hEDS and 38 controls, they aimed to spot biological patterns that help explain symptoms, support earlier diagnosis, and guide future treatments.
The researchers found 35 blood proteins that were different in people with hEDS compared to those without. Most of these changes were in proteins linked to the immune system, blood clotting, blood pressure, and inflammation. The largest group of changes involved the complement system, which helps the body fight infection and control inflammation.
These results point to a key role for immune and inflammatory changes, beyond connective tissue structure, in the development of hEDS, opening important new directions for research and potential treatments.
The Ehlers-Danlos Society was delighted to support this work through a research grant and by providing HEDGE study samples. A heartfelt thank you goes to all HEDGE participants, whose contributions are helping make groundbreaking research possible. The Society is excited by these findings, which represent important progress in understanding hEDS biology.
This research also builds on the large-scale work already underway with InVitro Cell Research (ICR) in collaboration with The Ehlers-Danlos Society, who will share their complementary results at the 2025 International Scientific Symposium (Toronto) in the abstract, Expression Proteomics Reveals Potential Dysregulated Pathways in Inflammation, Immunity, and Tissue Integrity in Hypermobile EDS.
The ICR team, working with The Ehlers-Danlos Society, has carried out one of the largest blood-based studies of its kind, examining over 700 people (324 with hEDS, 33 with HSD, and 341 controls).
Using advanced “proteomics,” a method that measures thousands of proteins in blood, they searched for disease-related patterns. Their work showed that hEDS and HSD share many underlying features, with important differences from people without these conditions.
They identified four main areas of change:
● Chronic inflammation – signs that the body’s immune system is overactive or unbalanced.
● Complement system changes and tiny blood-vessel stress – the part of immunity that helps fight infection appears to work differently.
● Tissue healing and nerve signals for pain – systems for repair and pain control may not function as expected.
● Connective tissue remodeling – the body’s “scaffolding” (connective tissue) may be repaired or maintained differently.
These results help scientists better understand why people with hEDS and HSD experience pain, fatigue, and fragile tissues, and point to new possibilities for diagnosis and treatment.
While not a diagnostic test yet, this large study provides vital clues about what is happening inside the body in these conditions.
The Ehlers-Danlos Society is thrilled to see such rapid progress in uncovering the biology of hEDS and HSD. These new insights, together with The Society’s continuing collaboration with ICR and the upcoming presentation of their large-cohort, extensive proteomics study, represent a major step toward better diagnostics and future therapies for the EDS and HSD community.
https://www.ehlers-danlos.com/exciting-new-research-sheds-light-on-heds-biology/
