Source catalog
38 sources across five strata. Each carries a stable identifier derived from its canonical URL and publication date — records attest to sources, and the loader rejects anything unresolved.
clinical 17 sources
- Hypermobile Ehlers-Danlos syndrome (a.k.a. Ehlers-Danlos syndrome type III and Ehlers-Danlos syndrome hypermobility type): Clinical description and natural history · American Journal of Medical Genetics Part C · expert review · 2017-03 · paywalled
source-1ad3f0edd57e0fab1524 - Surviving their stripes: the diagnostic odyssey and impact of life with hypermobile Ehlers-Danlos syndrome · BMJ · cohort study · 2025
source-21337422dde3976b584c — Qualitative study documenting medical gaslighting and trauma in the hEDS diagnostic journey. - Resistance to local anesthesia in people with the Ehlers-Danlos syndromes presenting for dental surgery · Journal of Dental Anesthesia and Pain Medicine · cohort study · 2019
source-27684d4afee8b83b9d25 — Online survey, 988 respondents with EDS; 88% reported inadequate local anesthesia vs 33% of controls. - Pain management in the Ehlers-Danlos syndromes · American Journal of Medical Genetics Part C · expert review · 2017-03 · paywalled
source-328501b217c2b3d0d2d2 - The 2017 international classification of the Ehlers-Danlos syndromes · American Journal of Medical Genetics Part C · consensus statement · 2017-03 · paywalled
source-36ad1cab53c4cea4f4b4 — Malfait et al.; the current nosology defining 13 subtypes. - PubMed Ehlers-Danlos query, most recent · PubMed · mechanistic study
source-80a5042e5779fea862b6 — Live discovery surface for the literature monitor; not cited as record evidence. - Articular mobility in an African population · Annals of the Rheumatic Diseases · cohort study · 1973 · paywalled
source-8cddcecd9d7a698123e5 — Beighton, Solomon, and Soskolne; the origin of the nine-point Beighton score. - An exploration of the journey to diagnosis of Ehlers-Danlos Syndrome (EDS) for women living in Australia · PLOS ONE · cohort study · 2024
source-8d222b21a7423563aba4 — Social-media-recruited survey; reports 10-12 year average diagnostic delay per international support groups. - Ehlers-Danlos syndromes: revised nosology, Villefranche, 1997 · American Journal of Medical Genetics · consensus statement · 1998 · paywalled
source-a0e3bc5bd3a0b3545cf8 — Beighton et al.; the six-type Villefranche nosology that governed diagnosis from 1998 to 2017. - Local anaesthetic failure in joint hypermobility syndrome · Journal of the Royal Society of Medicine · cohort study · 2005-02
source-aef7c864eb540644a26f — Hakim, Grahame, Norris, Hopper; 58% of hypermobile patients reported inadequate local anesthesia vs 21% of controls. - Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders · NCBI Bookshelf · expert review
source-be972ed50decef4cbf0b - A framework for the classification of joint hypermobility and related conditions · American Journal of Medical Genetics Part C · consensus statement · 2017-03 · paywalled
source-d7dec285eaee780f18a3 — Castori et al.; defines HSD relative to hEDS. - Patients with Ehlers-Danlos syndrome experience reduced effectiveness of lidocaine local anesthetic: a randomized cross-over clinical trial · Regional Anesthesia and Pain Medicine · randomized trial · 2025
source-d91980e8e90850a3f3b9 — n=135; shorter lidocaine duration in EDS patients, confirming decades of patient reports. - Health care supply in patients with Ehlers-Danlos syndromes and generalized hypermobility spectrum disorder: a German perspective · Orphanet Journal of Rare Diseases · cohort study · 2025
source-de164233cddfefc4105a — Median diagnostic delay 22 years for hEDS/HSD vs 14.5 years for monogenic EDS. - Diagnosed prevalence of Ehlers-Danlos syndrome and hypermobility spectrum disorder in Wales, UK: a national electronic cohort study and case-control comparison · BMJ Open · cohort study · 2019-11
source-eaeabc3db4dd07d41bc5 — Demmler et al.; diagnosed prevalence roughly 1 in 500, far above the older 1 in 5,000 textbook figure. - KLK15 alters connective tissues in hypermobile Ehlers-Danlos syndrome · iScience · mechanistic study · 2025-08
source-ee867f99ac8808a4ef80 — Norris Lab et al.; first gene associated with hEDS, with knock-in mouse model. - The diagnostic journey in adults with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders · PubMed · systematic review · 2021
source-fa671c0df94cd9c20ecb — Qualitative synthesis of 13 studies; organizes delay drivers into disease, patient, provider, and system factors.
10 sources
- r/Hypermobility · Reddit · cross-venue pattern
source-008a3b01a05582538013 — Subreddit for joint hypermobility; overlapping membership with r/ehlersdanlos. - What is EDS? · The Ehlers-Danlos Society · patient-organization synthesis
source-1f24758814c322b4d394 - Ehlers-Danlos Syndrome Patient Support Community · Ben's Friends · single-venue pattern · registration
source-2fd8a13a36c4a8bd2b01 - Patient Network and Support · The Zebra Network · patient-organization synthesis
source-4a561dc6a492a2155ab1 - EDS and HSD Support Community · Inspire · cross-venue pattern · registration
source-641ce29242a70e8a5f01 — Largest dedicated EDS support community; sponsored by The Ehlers-Danlos Society. - The Norris Lab hEDS Genetic Study update · The Ehlers-Danlos Society · patient-organization synthesis · 2024-06
source-bb268c000069896e8023 — Plain-language patient-org announcement of the KLK15 finding ahead of peer-reviewed publication. - EDS types · The Ehlers-Danlos Society · patient-organization synthesis
source-c55aca51ea775bf6d160 - The Ehlers-Danlos Society · The Ehlers-Danlos Society · patient-organization synthesis
source-d4079481e0bd2ac8d5f3 — Largest international patient organization for EDS and HSD; runs the DICE registry, EDS ECHO, and research funding. - r/ehlersdanlos · Reddit · cross-venue pattern
source-ec36295ad04f34148c63 — Largest public EDS discussion venue; over one hundred thousand members. - EDS and HSD community · The Ehlers-Danlos Society · patient-organization synthesis
source-fcaca0c559f4881b8f2f
gray literature 1 sources