Archive for the ‘EDS Research’ Category

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Books on Ehlers-Danlos Syndrome

Posted on March 14, 2024

With growing awareness about the Ehlers-Danlos syndromes, varying resources in different types of media developed over the last years. Our Chronic Pain Partners’ Team is collecting their favorite books, podcasts and films on EDS and its comorbid condition in a series of listicles you will find on our website over the next months. We are […]

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Outcomes of Craniocervical Instability Fusion Surgery in People with EDS

Posted on March 10, 2024

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, […]

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New Study: Pain Threshold and Sensation in cEDS

Posted on January 12, 2024

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 […]

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HEDS Researchers Explain Clinician-Associated Trauma

Posted on August 31, 2023

This is the second article in our series covering psychological medical trauma. The first article provided an introduction to what concepts of psychological medical trauma exist and the newly-created concept of clinician-associated trauma. It also introduced a study regarding hEDS patients and clinician-associated trauma. This article will look deeper into the details of this study […]

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How To Evaluate The Quality Of EDS Research Papers: A Conversation With Markus Bohn, PhD

Posted on April 30, 2023

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 […]

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Folate-Dependent Hypermobility: Researchers at Tulane’s EDS Clinic Look Into New Possible Mechanism For Hypermobile EDS

Posted on April 25, 2023

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 […]

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Folate-dependent Hypermobility: Discussing Tulane’s Recent Paper With Their Scientists

Posted on April 24, 2023

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, […]

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Researchers Found New Possible Causative Gene For HEDS: MIA3

Posted on March 29, 2023

Exciting news from Poland! Researchers from the Department of Clinical Genetics at Nicolaus Copernicus University in Torún, Poland, released a preprint of research that may hold the answers to the cause of hypermobile Ehlers-Danlos Syndrome (hEDS) for a part of the patient population. Specifically, Junkiert-Czarnecka et al. investigated the MIA3 gene in people with hEDS […]

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