Getting diagnosed with Hypermobile Ehlers Danlos syndrome can be extremely confusing and frustrating for not only the patient, but also the practitioner. hEDS is the only type of EDS that does not currently have a genetic marker. This means diagnosis is based off of clinical criteria.
In 2017, the Ehlers Danlos society created the diagnostic checklist currently used for diagnosis of Hypermobile Ehlers Danlos Syndrome.
It is important to note that MSK providers like Physical Therapists, Chiropractors, and Occupational Therapists can tell if you meet the diagnostic criteria, but they can not currently give you a formal diagnosis.
I highly recommend printing out the checklist and filling it out with a trusted provider. You could also fill it out yourself to the best of your own ability. Once completed, bring the checklist to a geneticist/rheumatologist/EDS specialist for a formal diagnosis.
Here is your go-to guide for filling out the checklist!
Criteria 1: Beighton Score
The Beighton score is out of 9 possible points and based on your age, you must meet a certain score to be diagnosed with generalized joint hypermobility.
≥6 pre-pubertal children and adolescents
≥5 pubertal men and woman to age 50 Beighton Score:
≥4 men and women over the age of 50
Criteria 2: is split into 3 features
You must meet 2 or more of the following 3 features.
Feature 1: Systemic Characteristics
You need 5/12 to “pass” this category
- Unusually soft or velvety skin
- When you rub your skin it will feel like its catching, similar to when you rub velvet in the opposite direction.
- Mild skin hyperextensibility
- Gently pull the skin on the hairless part of the forearm until resistance is met. Skin that stretches more than 1.5cm indicates hyperextensibility.
- You may have seen the pictures of the extremely stretchy skin, but that picture has become harmful to the community. You do NOT need excessively stretchy skin to have hEDS.
- Unexplained striae distensae or rubae at the back, groins, thighs, breasts and/or abdomen in adolescents, men or pre-pubertal women
- Think of these as atypical stretch marks. For example, stretch marks that go horizontal when usually they would be vertical. Stretch marks that came during a time period you did not grow, or stretch marks that appear on your back, armpits, elbows and other strange places that are uncommon.
- Bilateral piezogenic papules of the heel
- Recurrent or multiple abdominal hernia(s)
- Atrophic scarring involving at least two sites and without the formation of truly papyraceous and/or hemosideric scars as seen in classical EDS
- Indented scars that appear above the surface in a non symmetrical manner.
- Pelvic floor, rectal, and/or uterine prolapse in children, men or nulliparous women without a history of morbid obesity or other known predisposing medical condition
- This is when your organs sag or droop out of their normal position
- Dental crowding and high or narrow palate
- Reduced width of the upper jaw
- Arachnodactyly, as defined in one or more of the following:
- Arm span-to-height ratio ≥1.05
- Spread out your arms horizontally and measure from the tip of the longest finger of one side to the longest finger on the other. Divide this by your height.
- Mitral valve prolapse (MVP) mild or greater based on strict echocardiographic criteria
- Aortic root dilatation with Z-score >+2
Feature 2: Family History
This catagory can be “passed” if your parents and or siblings have been diagnosed with hEDS.
Feature 3: Symptoms
You must have at-least ⅔ of the following to “pass”
- Musculoskeletal pain in two or more limbs, recurring daily for at least 3 months
- Chronic, widespread pain for ≥3 months
- Recurrent joint dislocations or frank joint instability, in the absence of trauma
Criteria 3
The last and final Criteria consists of ruling out other conditions. In order to do this, you may want to seek out a geneticist who specializes in connective tissue disorders. This is as far as MSK professionals can get on the checklist.
Filling out Criteria 1 and 2 can be extremely beneficial to your patients. This can allow them to ask the proper questions and seek out help from a genetecist/rheumatologist/EDS specialist.
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