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Familial Chiari Malformation: Prevalence of Connective Tissue Disorders and Other Comorbidities Heukwa-Tefoung, Anne; Bui, Alicia; Gilmer, Holly BACKGROUND AND OBJECTIVES: Chiari malformation type 1 (CM-I) is frequently associated with connective tissue disorders (CTDs), particularly...

Has anyone heard of the Collagen Advocacy Network? It seems to be a new group (first post on Instagram was on March 12) that focuses on the stories and needs of people with genetic EDS types. Their Instagram bio is “Advocacy & community for people with rare and ultra rare Ehlers Danlos...

Platelet defects in patients and mice with Ehlers-Danlos syndrome Ehlers-Danlos syndrome (EDS) is a group of connective tissue disorders characterized by joint hypermobility, skin hyperelasticity, perivascular tissue fragility, easy bruising, and increased bleeding risk. Abnormal bleeding in...

Obstructive sleep apnoea and quality of life in Ehlers-Danlos syndrome: A parallel cohort study Thomas Gaisl, Cecilia Giunta, Daniel J Bratton, Kate Sutherland, Christian Schlatzer, Noriane Sievi, Daniel Franzen, Peter A Cistulli, Marianne Rohrbach, Malcolm Kohler...

Prevalence of Obstructive Sleep Apnea in Joint Hypermobility Syndrome: A Systematic Review and Meta-Analysis Karim Sedky, Thomas Gaisl, David S. Bennett https://jcsm.aasm.org/doi/10.5664/jcsm.7636 (PDF available) ABSTRACT Study Objectives: Because of associated abnormalities affecting...

Abstract Background Hypermobility Spectrum Disorders (HSD) and hypermobile Ehlers-Danlos syndrome (h-EDS) are multisystemic connective tissue disorders involving joint hypermobility and numerous other manifestations. Autonomic dysfunction, chronic pain, and chronic fatigue are known...

This information is from the ME Action website, see http://www.meaction.net/2017/10/30/new-living-w-me-support-group-2/ The November and December schedule for the Living w/ ME Support Group has just been announced: Sunday, November 12: Avoiding Crashes Sunday, December 10: Surviving the...

Abstract Background Anxiety symptoms are elevated among people with joint hypermobility. The underlying neural mechanisms are attributed theoretically to effects of variant connective tissue on the precision of interoceptive representations contributing to emotions. Aim To investigate the...

Now published - link ***************** Preprint https://www.medrxiv.org/content/10.1101/2024.09.26.24314417v1 A Network Medicine Approach to Investigating ME/CFS Pathogenesis in Severely Ill Patients: A Pilot Study Li-Yuan Hung, Chan-Shuo Wu, Chia-Jung Chang, Peng Li, Kimberly Hicks, Becky...

Abstract Objectives: To investigate whether constitutional laxity of the connective tissues is more frequently present in adolescents with chronic fatigue syndrome (CFS) than in healthy controls. Increased joint hypermobility in patients with CFS has been previously described, as has lower blood...

This is the preprint published in 2024. The paper was published in 2025 with the new title. See post #10. Variants in the Kallikrein Gene Family and Hypermobile Ehlers-Danlos Syndrome, 2024, Gensemer et al Abstract Hypermobile Ehlers-Danlos syndrome (hEDS) is a common heritable connective...

Hereditary Connective Tissue Diseases and Risk of Post-Acute SARS-CoV-2 Bartlett, Maggie L.; Sova, Daniel; Jain, Mahim We completed a retrospective review of data collected by the JH-CROWN consortium based on ICD10 codes for a hospitalized cohort. The severity and prevalence of COVID-19 and...

Hemostatic abnormalities in patients with Ehlers–Danlos syndrome A. Artoni; A. Bassotti; M. Abbattista; B. Marinelli; A. Lecchi; F. Gianniello; M. Clerici; P. Bucciarelli; S. La Marca; F. Peyvandi; I. Martinelli Background: Ehlers–Danlos syndrome (EDS) includes a heterogeneous group of...

Characterization of bleeding symptoms in Ehlers–Danlos syndrome Mariia Kumskova; Gagan D. Flora; Janice Staber; Steven R. Lentz; Anil K. Chauhan Background Easy bruising is included as a major or minor criterion for the classification of multiple types of Ehlers–Danlos syndrome (EDS). Despite a...

Ehlers-Danlos Syndrome: Germany treatment for Hastings teen - ‘If we don’t go, I one hundred per cent believe Jaimee will die’

High overlap in patients diagnosed with hypermobile Ehlers-Danlos syndrome or hypermobile spectrum disorders with fibromyalgia and 40 self-reported symptoms and comorbidities 2023, Fairweather et al Background: Joint pain is a common symptom in patients with hypermobile Ehlers-Danlos Syndrome...

Ehlers–Danlos syndromes, hypermobility spectrum disorders, and associated co-morbidities: Reports from EDS ECHO Alan J. Hakim; Brad T. Tinkle; Clair A. Francomano Volume 187, Issue 4 Special Issue: Ehlers‐Danlos syndromes, Hypermobility Spectrum Disorders, and Associated Co‐Morbidities: Reports...

I came across this. COVID-19 and Ehlers-Danlos Syndrome: The Dangers of the Spike Protein of SARS-CoV-2 This article describes the effect of the spike protein from both covid and the covid vaccine on those with Ehlers Danlos syndrome. CONCLUSION Regarding SARS-CoV-2 infection and vaccine...

Full title: RNA-Seq of Dermal Fibroblasts from Patients with Hypermobile Ehlers–Danlos Syndrome and Hypermobility Spectrum Disorders Supports Their Categorization as a Single Entity with Involvement of Extracellular Matrix Degrading and Proinflammatory Pathomechanisms Abstract Hypermobile...

https://www.statnews.com/2022/12/12/ehlers-danlos-syndrome-patients-turned-researchers/