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 ~60 minute lecture with QA opportunities during the lecture. 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.
HSD101 Checklist with scan code to website (to give patients).
- HSD 101: Basics of HSD/hEDS and self-care: Slides. Recording of HSD 101
- HSD 102: Basics of POTS and MCAD self-care: Slides. Recording of HSD 102
- HSD 103: Pain management in HSD/hEDS: Slides. Recording of HSD 103
- HSD 104: Exercise progression in HSD/hEDS and POTS Slides. Recording of HSD 104
- HSD 105: Posture and Joint Protection. Slides.
" Recording of HSD105.
Links to prior HSD 105, EDS in Children: Slides. Recording of previous HSD 105: HSD in Children
- HSD 106: GI issues in HSD/EDS, POTS, MCAS - Slides . Recording of HSD 106 (2021)
- HSD 107: Managing Fatigue in HSD, POTS, and MCAD. Slides. Recording of HSD 107
- HSD 108: Headaches, migraines, and TMJ pain associated with HSD, POTS and MCAS. Slides. Recording of HSD 108
- HSD 109: Breathing with HSD. Slides. Recording of HSD 109.
- HSD 110: Lumbar Instability. Slides. Recording of HSD 110
- HSD 111: Cervical Instability: PT Management. Slides for Part 1: Anatomy and Diagnostic Testing. Recording of HSD 111, Part 1. This background information is for people who want more technical, medical info, and will NOT be covered in the live lecture.
Slides for Part 2: PT Management of Cervical Instability. Recording of HSD 111, Part 2
- HSD 112: The Vagus Nerve in HSD. Slides. Recording of HSD 112.
- HSD 113: Fascia. Fascia is the most prevalent type of connective tissue. Understanding it may help understand why certain treatment approaches work. Slides. Recording of HSD 113.
- HSD 114: Hospitals stays and surgery with the Trifecta. People with HSD, POTS and MCAS are vulnerable to specific problems when in the hospital, either planned or unplanned. Slides. Handout. Recording of HSD 114.
- Basics of HSD for Health Care Providers. Slides. Recording
Also consider viewing one of the many expert physician lectures available at: EDS Awareness webinars.
Links to prior HSD 105, EDS in Children: Slides. Recording of previous HSD 105: HSD in Children
Handouts created by Prof. Russek, have been moved to a separate page. See link at the top of this page.