hEDS, JHS and HSD
Although there are some differences between the diagnostic terms used, at the moment everyone within this group may experience the same potential symptoms, the same linked conditions, and require the same symptom-based treatment and management, with an awareness that a heritable disorder of connective tissue may be present.
More research is needed before clear, evidence based diagnostic guidelines that differentiate between people in this group can be brought into action. So while research is ongoing, there are a wide variety of terms which might be used in practice:
Common symptoms can include:
-
Joint instability and hyper-extension, sprains, strains, subluxations, and/or dislocations
-
Stomach and digestive problems (like reflux and slow stomach emptying)
-
Poor proprioception
-
Bladder and bowel problems
-
Autonomic dysfunction including postural tachycardia syndrome (e.g. dizziness, fainting)
-
Easy bruising
-
Poor wound healing
-
Long term (persistent) pain
-
Stretchy or soft skin
-
Chronic fatigue
Diagnoses and symptom descriptors
used within this group
Hypermobile Ehlers-Danlos syndrome (hEDS) (2017 criteria)
Used when the 2017 hEDS criteria are met (see our page on the hEDS criteria). These criteria have not yet been validated, and are currently being reviewed, and so are not widely used.
Ehlers-Danlos syndrome type 3 (EDS3 or EDS III), HMS/EDS, and Ehlers-Danlos syndrome hypermobility type.
These were all used for people who would currently meet the hEDS or HSD criteria. Various criteria have existed, including the Beighton score and Brighton diagnostic criteria, but in practice they seem to have been used to denote ‘hypermobile and has lots of related issues, probably due to connective tissue disorder’.
Joint hypermobility syndrome (JHS)
Commonly used for people who have symptomatic hypermobility but do not meet the criteria for any of the known, genetically identifiable, hypermobility syndromes.
Some professionals seem to have used these terms for patients who are ‘hypermobile and have some related issues, but not enough to make me think EDS’.
Others have used JHS interchangeably with EDS3.
Possible/probable connective tissue disorder
Used when the range and/or severity of signs and symptoms indicates that connective tissue may be affected, but no known condition has been definitively identified.
Used where individuals meet the the 2017 HSD criteria. As with the hEDS 2017 criteria, these are still in the process of being validated. (see our page on the HSD criteria)
Unknown/Undifferentiated/Undefined/Unidentified/suspected connective tissue disorder
Used where signs and symptoms strongly point to a connective tissue disorder, but not meeting any of the current criteria for known HDCTs. It is also used pending further investigation into specific HDCTs.
Other Commonly used symptom descriptors include:
-
Symptomatic hypermobility (This is increasingly commonly used, and is an appropriate term for anyone who doesn’t clearly fit into any of the diagnoses which are more specific.)
-
A hyperflexibility syndrome
-
Hyperlaxity of the joints
-
Familial ligamentous laxity
-
Familial hypermobility
Check out the blog post below for a more detailed explanation of why all these different terms exist for what is essentially the same group of people, with the same potential symptoms.