@vdaylor
Studying hEDS through research and lived experience | Future physician, MUSC COM ’29 | Views are my own
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MUSC Lunch & Learn Event 2/12/26
MUSC Lunch & Learn Event 2/12/26
EurekAlert!: Changing the paradigm on hypermobile Ehlers-Danlos Syndrome: Connective tissues don’t tell the whole story
EurekAlert!: Changing the paradigm on hypermobile Ehlers-Danlos Syndrome: Connective tissues don’t tell the whole story
Three recently published studies by Medical University of South Carolina researchers each adopted a unique approach to improving our understanding of hypermobile Ehlers-Danlos Syndrome (hEDS), one taking a clinical, one a genetic and the most recent a proteomics approach. All three studies suggested a potential immune component for the disease, challenging long-held assumptions that hEDS is primarily a connective tissue disease. This new conceptualization of the disease better reflects the lived experience of patients.
COMPLICATED — Open Eye Pictures
COMPLICATED — Open Eye Pictures
Kids with complex, invisible illness and their families face unimaginable hurdles as they confront failing medical and child protective systems.
Link to Participate in an EDS Research Study
Link to Participate in an EDS Research Study
The Norris Lab
The Norris Lab
Past Publications
NEW: [Preprint] Complex Genetics and Regulatory Drivers of Hypermobile Ehlers-Danlos Syndrome: Insights from Genome-Wide Association Study Meta-analysis
NEW: [Preprint] Complex Genetics and Regulatory Drivers of Hypermobile Ehlers-Danlos Syndrome: Insights from Genome-Wide Association Study Meta-analysis
medRxiv - The Preprint Server for Health Sciences
NEW: Proteomic discoveries in hypermobile Ehlers–Danlos syndrome reveal insights into disease pathophysiology
NEW: Proteomic discoveries in hypermobile Ehlers–Danlos syndrome reveal insights into disease pathophysiology
NEW: Defining the Chronic Complexities of hEDS and HSD: A Global Survey of Diagnostic Challenges, Life-Long Comorbidities, and Unmet Needs
NEW: Defining the Chronic Complexities of hEDS and HSD: A Global Survey of Diagnostic Challenges, Life-Long Comorbidities, and Unmet Needs
Co-occurrence of tethered cord syndrome and cervical spine instability in hypermobile Ehlers-Danlos syndrome
Co-occurrence of tethered cord syndrome and cervical spine instability in hypermobile Ehlers-Danlos syndrome
Variants in the Kallikrein Gene Family and Hypermobile Ehlers-Danlos Syndrome
Variants in the Kallikrein Gene Family and Hypermobile Ehlers-Danlos Syndrome
Hope for Hypermobility: Part 1—An Integrative Approach to... : Topics in Pain Management
Hope for Hypermobility: Part 1—An Integrative Approach to... : Topics in Pain Management
An abstract is unavailable.
Hope for Hypermobility: Part 2—An Integrative Approach to... : Topics in Pain Management
Hope for Hypermobility: Part 2—An Integrative Approach to... : Topics in Pain Management
Blog Posts
Tethered Cord Syndrome and Cervical Spine Instability in hEDS
Tethered Cord Syndrome and Cervical Spine Instability in hEDS
Part 1 - Navigating Medical (Mis)Information with Dr. Cortney Gensemer
Part 1 - Navigating Medical (Mis)Information with Dr. Cortney Gensemer
Part 2 - Navigating Medical (Mis)Information with Dr. Cortney Gensemer
Part 2 - Navigating Medical (Mis)Information with Dr. Cortney Gensemer
A co-authored blog with Victoria Daylor featuring: Linda Bluestein, MD, Katie Goss, RN, Taylor Goldberg, DC, and Jeannie Di Bon, MA CIMSPA.
Other Resources
Orthopedic Pillow (not sponsored)
Hypermobile Ehlers-Danlos Research Article in American Journal of Medical Genetics
Hypermobile Ehlers-Danlos Research Article in American Journal of Medical Genetics
The hypermobile type of Ehlers–Danlos syndrome (hEDS) is likely the most common hereditary disorder of connective tissue. It has been described largely in those with musculoskeletal complaints inclu...
Assessing Joint Hypermobility (Beighton Scale)
Assessing Joint Hypermobility (Beighton Scale)
EDS 2017 Diagnostic Criteria
EDS 2017 Diagnostic Criteria
More Information about Ehlers-Danlos Syndrome
More Information about Ehlers-Danlos Syndrome
Millions have the same 'bendy body' disease as my daughter. Why isn't the medical profession paying more attention? | CNN
Millions have the same 'bendy body' disease as my daughter. Why isn't the medical profession paying more attention? | CNN
Hypermobile Ehlers-Danlos syndrome is a connective tissue disorder. When Sarah Lazarus’ daughter was diagnosed with it, she discovered that the majority of cases are going undiagnosed for decades.
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