Ehlers-Danlos/Hypermobility Spectrum Disorder

[Why the zebra?]

Why the zebra?
So, why is there always a picture of a zebra when we talk about HSD? Most health care professionals learned, in school, “If you hear hoofbeats, look for horses, not zebras” as a reminder that common conditions are… much more common. But, if we are so convinced that it will be a horse that we don’t really pay attention, we might not notice if it is a zebra. That is how people with the various forms of Ehlers-Danlos Syndrome have felt – unnoticed, undiagnosed, unrecognized. As it turns out, HSD is actually pretty common, so it might be a horse, after all! But the other forms of EDS, even maybe hEDS, are probably still zebras. Did you know that a group of zebras is called a “dazzle”?

"Hypermobility 101" - basics of hypermobility.

Hypermobility Spectrum Disorder (HSD) is the most common systemic inherited connective tissue disorder in humans. It may affect as many as 10 million Americans, and may be almost as common as Fibromyalgia, and 100x more common than rheumatoid arthritis. The condition used to be called “Hypermobility Syndrome,” (HMS) or “Hypermobile Joint Syndrome” (HJS), “Joint Hypermobility Syndrome” (JHS), Ehlers-Danlos Syndrome hypermobility type (EDS-HT) and Ehlers-Danlos Syndrome type III. All of these diagnoses are now combined into the term HSD.

A subset of people with HSD meet the diagnostic criteria for hypermobile Ehlers-Danlos Syndrome (hEDS), but many people with one of the above diagnoses will not meet all the diagnostic criteria for hEDS, and have HSD – that is, are somewhere on the hypermobility spectrum.

What is the difference between HSD and hEDS? (link to Ehlers-Danlos Society page)

How do you know if you are hypermobile? Use the Beighton score, shown below. Score 1 point for each of the following, on each side of your body:

Pinky past 90° Thumb touches forearm Elbow and knees hyperextend >10° Hands to floor

This gives you a score out of 9 points. (Link to more detail, including video of instructions.)

  • Musculoskeletal: joint hypermobility, subluxations/dislocations, sprains, muscle spasm, jaw pain, flat feet, finger deformities, joint pain, muscle pain, fractures, widespread pain or hypersensitivity
  • Skin: stretchy skin, easy bruising, atrophic scarring, poor wound healing, frequent hernias
  • Cardiovascular: dysautonomia (poor temperature control, poor blood pressure or heart rate control, passing out)
  • Gastrointestinal: constipation, diarrhea, gas, abdominal pain, gastritis, indigestion, food intolerance
  • Other: developmental delay, poor coordination, anxiety, trouble sleeping, fatigue, brain fog, frequent infections, allergic reactions, medication sensitivity, incontinence, organ prolapse, sexual dysfunction
  • Castori et al, 2011; Columbi et al, 2015; Tinkle et al, 2017
  • Chronic pain: fibromyalgia, myofascial pain, osteoarthritis, temporomandibular pain, chronic headaches
  • Developmental delay in children
  • Dysautonomia: postural orthostatic tachycardia syndrome (POTS), orthostatic hypotension, chronic fatigue
  • Mast Cell Activation Disorder/Syndrome (MCAD/S):
  • GI disorders: gastroparesis (slow digestion), constipation, GERD, IBS, malabsorption syndrome, food intolerance
  • Tethered cord syndrome (Henderson et al, 2017)


"Hypermobility 101" lectures are running virtually on Zoom. Each will be a ~45 minute lecture followed by QA. Please realize that I cannot offer personal medical advice. The recordings and handouts provided here are not a substitute for medical advice, just a starting point for talking with your health care providers. Email me (Lrussek@clarkson.edu) to get the Zoom access information for these lectures. Lectures are currently scheduled for Fridays, 4-5 pm Eastern time zone.



Also consider viewing one of the many expert physician lectures available at: EDS Awareness webinars.


Handouts created by Leslie Russek, PT, DPT, PhD, OCS, physical therapist specializing in managing HSD:

Helpful HSD/EDS Links for both patients and health care providers:

Postural Orthostatic Tachycardia Syndrome (POTS) resources. POTS is common in HSD, and not always diagnosed. It presents as severe fatigue, poor tolerance to exercise, headaches, heart palpitations, anxiety (even panic attacks), brain-fog, fainting, nausea, GI problems and more.

Mast Cell Activation Syndrome/Disorder (MCAS/D) resources. MCAS is also common in people with HSD/EDS. MCAS presents as hives, itching, flushing, severe allergies, irritable bowel, chronic fatigue, chronic pain, headaches, brain-fog and more.