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.

image of stethoscope laying on an open book
Keeping up with EDS and HSD

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 com if you find any broken links or outdated information.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: November 14, 2019.

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 2019.) 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.)

graphic of an iceberg with labels of EDS above the water line, and HSD below
See the rest of the iceberg!

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 a form of EDS, 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), 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

See also Recommended Books and EDS Resources for more in depth information and literature. (I keep both fairly up to date.) JG