Research

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Find Answers Faster: The EDS411 Living Library

Discover the EDS411 Living Library App  Imagine a place where you can find reliable, community-sourced information about Ehlers-Danlos Syndrome (EDS) without the endless search through disorganized forums or the distracting noise of social media. Welcome to EDS411 Living Library, your ultimate resource for navigating EDS with confidence and ease brought to you by EDS S.H.A.R.E. […]

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A black and white image of a small table near a wooden wall. The table is stacked haphazardly with books and papers.

Research Round-Up, Edition One

Welcome, pardner, to our new feature, Research Round-up! In each issue, we’ll bring you summaries of some of the latest EDS research to hit the medical journals. We’ll usually have five or so articles, but we’ve got a special edition this time—10 articles for your information and enjoyment! Yee-haw! Hitch up your horse, grab a […]

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Norris Lab Finds HEDS Gene: Kallikrein

Chronic Pain Partners is excited to share a significant breakthrough from the Norris Lab regarding hypermobile Ehlers-Danlos Syndrome (hEDS). After a long wait, the research, spearheaded by Dr. Cortney Gensemer, identifying a genetic variant associated with hEDS has been published, pinpointing mutations in the Kallikrein gene family.  The Kallikrein gene family, known for encoding enzymes […]

A set of different surgical tools

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, […]

selective focus photo of magnifying glass

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 […]

Markus Bohn, a man with short dark blonde hair and blue eyes. He is wearing a jeans jacket and has a beard.

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 […]

Many cells connected by extracellular matrix

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 […]

Jacques Courseault, a black man with black hair and black glasses. He wears a blue shirt and a green bow and lifts up the arm of a black woman with a tattoo on her arm in an examination room.

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, […]