For Doctors
Below please find the latest and best resources for doctors for getting quickly up to speed on everything to do with hypermobility spectrum disorders and all forms of the Ehlers-Danlos Syndromes. 2021

This information is subject to change frequently. Please notify us at info @ ohtwist. com if you find any broken links or outdated information.
LAST UPDATED: February 1, 2021.
Brief History of EDS and the HSDs
The international Ehlers-Danlos Society (formerly the Ehlers-Danlos National Foundation until 2016) brought together some of the best minds in the field who drafted and produced the first major update to the nosology and diagnostic criteria for all forms of the Ehlers-Danlos syndromes since the Villefranche nosology in 1998.
This included describing a brand new diagnostic category called the Hypermobility Spectrum Disorders. (ICD-10 codes not established yet in 2020.) Together with hEDS, these supplant and obsolete the old diagnoses of JHS, HMS and BJHS prior to 2017. (People with these diagnoses may retain them unless re-evaluated for some reason.)

Think of these as the bulk of the iceberg below the water line, not medically visible to the diagnostic eye – until recently (2017).
These are patients who will have many signs of a systemic connective tissue disorder like EDS (including things like myopia, tendonitis, bursitis, subluxations, dislocations, stretchy skin, abdominal hernias, fallen arches, more), but do not fully meet the criteria for any of the currently 13 formally recognized forms of EDS, or similar HCTDs like Marfan syndrome, Stickler syndrome, Osteogenesis Imperfecta, or Loeys-Dietz syndrome. (2019.)
Like IBS and Fibromyalgia, (which happen to both be highly comorbid in this population and probably results of having a CTD), the HSDs are a diagnosis of exclusion.
And all doctors have seen HSD patients already – we are the frequent flyers in your offices in fact, thanks to so many “issues with our tissues”.
You just usually get us after we’ve aged prematurely and come down with arthritis, falling arches, weak teeth, thin skin, neuromas, detached retinas, etc. As some wise person once quipped (we don’t know exactly whom to credit yet):
“If you can’t connect the issues, think connective tissues.”
Anonymous, quoted by Dr. Heidi Collins in her 2014 talk of the same title
Best Resources to Get Up to Speed Quickly
- EDS Toolkit for GPs hosted by the Royal College of General Practitioners in London since 2018 (latest info only, no CMEs) STILL UP 2/1/21!
- Free online Physician CME Education hosted by EDS Awareness since 2017
- Project EDS ECHO hosted by The Ehlers-Danlos Society also offering CMEs for doctors (and additional ECHOs for other allied health professionals now in 2019).
- Ten Tips for Doctors by Jan Groh, author of this Oh TWIST site
Additional Oh TWIST resources for those willing to read more in depth:
- When to Suspect HSD/hEDS / hypermobile Ehlers-Danlos syndrome
- When Else to Suspect HSD/hEDS etc.
- What are the new Hypermobility Spectrum Disorders
- Diagnosing HSD and EDS
- Common Comorbidities (there are even more than shown here)
- The Chronic Constellation most often seen in hypermobile families
- Additional Resources on the HSDs and EDS
- Recommended Books