Ehlers-Danlos Brochure: “EDS: Hiding in Plain Sight” — Sources List

The following are the sources for the EDS Awareness brochure titled “EDS: Hiding in plain sight”:

Marco Castori, MD, PhD
Ehlers-Danlos Syndrome, Hypermobility Type: An Underdiagnosed Hereditary Connective Tissue Disorder with Mucocutaneous, Articular, and Systemic Manifestations


Howard P Levy, MD, PhD

Ehlers-Danlos Syndrome, Hypermobility Type
Synonyms: EDS Hypermobility Type, EDS Type III, Ehlers-Danlos Syndrome Type III
Initial Posting: October 22, 2004; Last Update: September 13, 2012.


Dr. Neilson’s Webinar (EDS Awareness “Educational Series”)


Dr. Heidi Collins’ general session, “If You Can’t Connect the Issues, Think Connective Tissues”
Presented at EDNF’s Learning Conference in Houston, 2014


Dr. Clair Francomano’s presentation, “Ehlers-Danlos’ Affect on Multiple Body Systems”
Presented at the 2013 TCAPP Conference


Sources for prevalence statistics:

  • Brad Tinkle was our Medical Advisor for this brochure. Dr. Tinkle recommended that we use 1 in 100.  He agreed to quotation of his professional estimate: “1-5% of the general population”.


  • Dr. Francomano and Dr. Grahame have cited similar numbers in public– approximately 1 in 100.
    Also, Dr. Neilson cited a similar statistic in his presentation.


  • Marco Castori states “a frequency of 0.2–0.6%, with the lowest value better fitting for men and the highest for females, appears more realistic in Europe and USA. However, no systematic study accurately investigating the real incidence of JHS/EDS-HT has been performed to date.”  (He is talking about JHM/EDS-Hypermobility Type)