Research
You Made a Difference in Scientific Research for hEDS
Recent Research Published with Community Support Several members of the hypermobile community responded to the calls for data before July 2023 to collect saliva as DNA samples to be shared and categorized by the scientists at the Medical University of South Carolina (MUSC). The MUSC Norris Lab thanks the many patients suffering from hEDS who […]
HEDS or HSD: Study Question Diagnostic Criteria
“The 2017 [hypermobile Ehlers-Danlos Syndrome diagnostic] criteria were introduced to improve diagnostic specificity but have faced criticism for being too stringent and failing to adequately capture the multisystemic involvement of hEDS,” states a paper titled “Looking back and beyond the 2017 diagnostic criteria for hypermobile Ehlers-Danlos syndrome: A retrospective cross-sectional study from an Italian reference […]
Outcomes of Craniocervical Instability Fusion Surgery in People with EDS
A recent study by Henderson et al. found significant benefits for EDS patients with severe craniocervical instability who underwent occipito-cervical fusion surgery. Craniocervical instability is one of the most severe neurological complications of the Ehlers-Danlos syndromes, causing many affected individuals symptoms such as headaches, severe full body pain, dizziness, nausea, blurred vision, paresthesia, fatigue, weakness, […]
New Study: Pain Threshold and Sensation in cEDS
A new study from Ghent, Belgium, discusses the difference between pain sensation and pain thresholds between subjects with genetically-confirmed classical Ehlers-Danlos syndrome (cEDS) and those without any form of Ehlers-Danlos Syndrome (EDS). The article, published in The Journal of Pain, discussing this research is “Sensory Profiling in Classical Ehlers-Danlos Syndrome: A Case-Control Study Revealing Pain […]
Part One: EDS & Psychological Medical Trauma: An Introduction
[Content warning: trauma, PTSD, mental healthcare, negative clinician behavior, difficult medical encounters] Have you ever read something that left you speechless? I have so many thoughts and feelings about this article – ones that I can’t express with any sort of coherence at the time. What I can say: clinicians READ THIS (finger pointing down […]
How To Evaluate The Quality Of EDS Research Papers: A Conversation With Markus Bohn, PhD
Over the last few years, the Ehlers-Danlos syndromes have become more than just an afterthought for many researchers across the globe. However, with the growing number of academic papers published, it also got much harder for patients to evaluate the quality of those papers. Moreover, it’s incredibly challenging for people who aren’t scientists to tell […]
Folate-Dependent Hypermobility: Researchers at Tulane’s EDS Clinic Look Into New Possible Mechanism For Hypermobile EDS
A recent publication by scientists at Tulane University’s EDS clinic proposes a possible new mechanism behind hypermobility: folate dependency. The researchers hypothesize that MTHFR mutations may lead or contribute to a form of hypermobile EDS and present a treatment with 5-methyltetrahydrofolate to improve the patient’s symptoms. Tulane’s EDS Clinic Two years ago, Tulane University’s EDS […]
Folate-dependent Hypermobility: Discussing Tulane’s Recent Paper With Their Scientists
A recent publication by researchers at Tulane University hypothesizes MTHFR mutations lead to folate deficiency, resulting in hypermobility. The researchers also propose these mutations may cause or contribute to a form of hypermobile EDS. Journalist Karina Sturm spoke with Jacques Courseault, physical medicine and rehabilitation and sports medicine doctor at Tulane’s Hypermobility and EDS clinic, […]
