Conditions
Hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders
Very flexible joints that hurt, slip or sprain, often with soft, stretchy or fragile skin.
About hEDS and HSD
Connective tissue is the material that holds the body together, in joints, skin, blood vessels and organs. In hypermobile Ehlers-Danlos syndrome (hEDS), joints move further than usual and can slip, sprain or hurt, and skin may be soft, stretchy or slow to heal.
Hypermobility spectrum disorders (HSD) is the name clinicians use when very flexible joints cause real problems, such as pain or joints that slip, and the overall picture does not fit hEDS. Both can affect daily life, and both deserve care.
There is no blood or genetic test for hEDS. A clinician makes the diagnosis from an exam, your history and your family history. Genetic testing is sometimes used to look at other types of Ehlers-Danlos syndrome.
Who usually evaluates it: Often a clinical geneticist, a rheumatologist, or another clinician with experience in hypermobility.
What you can record in Selihc Health
- Joints that slip, sprain or come out of place, and when it started
- Pain, tiredness and other symptoms over time
- Skin that stretches, bruises easily or scars widely, with photos
- Relatives with similar problems or a diagnosis
- Your own check of how far your joints bend, labeled as self-reported
What only a clinician can do
- The joint flexibility exam
- Examining skin, scars and other body features
- Looking for other conditions that can cause similar problems
- Genetic testing, when it is needed
The published criteria
Your summary organizes your records against these sources, for your clinician to review. What clinicians see
Hypermobile Ehlers-Danlos syndrome: 2017 international classification
Malfait F, Francomano C, Byers P, et al. The 2017 international classification of the Ehlers-Danlos syndromes. Am J Med Genet C Semin Med Genet. 2017;175(1):8-26.
Draft, awaiting clinical reviewVersion 1Read the source(opens in a new tab)
Ehlers-Danlos syndromes and hypermobility spectrum disorders: 2026 international classification
New international classification of the Ehlers-Danlos syndromes and hypermobility spectrum disorders. American Journal of Medical Genetics, expected December 2, 2026.
Not encoded yet: waiting for publicationVersion 1Read the source(opens in a new tab)
This page is general information written for patients, not medical advice. Content is a draft awaiting clinical review.
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