A quick primer on EDS and the study criteria
Ehlers Danlos Syndrome (EDS) is a connective tissue disorder. EDS is actually a group of related disorders with subtypes differentiated by symptoms and genetic causes. The most common symptom in EDS subtypes is joint hypermobility, which is seen in the classic (cEDS) and hypermobility (hEDS) subtypes and occasionally in the other less common subtypes.
In 2017, there was a major reclassification of EDS subtypes, moving from the nomenclature of EDS Type I, II, III, IV etc. to cEDS (formerly Type I), hEDS (formerly Type III), vEDS (formerly Type IV) and so forth. This change in nomenclature also meant a change in diagnostic criteria. While the genetic basis of most EDS subtypes has been established, the genetic basis for hEDS is not clear. As such, there are genetic tests for all but hEDS. This subtype is diagnosed based on clinical signs, using the Beighton scale to measure the degree of hypermobility of specific joints, and clinical and familial history.
Even though hEDS does not have a genetic test, it is clear that it behaves in an autosomal dominant fashion. This means that you only need to have 1 "copy" of whatever mutation that causes hEDS to have the syndrome, and that it is not sex linked, so there is not a sex bias in EDS sufferers. An example of sex-linked trait is male patterned baldness. People diagnosed with hEDS usually have multiple family members with the same diagnosis.
To complicate the story, in the past people could be diagnosed with "benign joint hypermobility", "joint hypermobility syndrome", a specific EDS subtype, or multiple EDS subtypes. "Benign joint hypermobility" and "joint hypermobility syndrome" were never properly defined, and my experience is that these diagnoses come from doctors with either outdated educations, or those who frankly, are misinformed. The 2017 reclassification of EDS was an effort to clarify the definition of each EDS subtype, but specifically the hypermobility subtype. Previous classifications led to a wide range of what was considered normal joint hypermobility versus abnormal, EDS hypermobility. Joint mobility exists on a spectrum, and being very mobile in a few joints is not sufficient to be considered an EDS patient.
Confused yet? So were the doctors. So, the 2017 reclassification narrowed the diagnostic criteria for hEDS. This means that there are some EDS patients diagnosed with the hypermobility sub-type that may not be diagnosed with hEDS if diagnosed with the new criteria. In addition, a new diagnosis called Hypermobility Spectrum Disorder (HSD) was made, and if you don't meet enough criteria for the hEDS diagnosis, you are diagnosed with HSD. It is possible to have a pre-2017 diagnosis and if re-diagnosed today, to be classified as HSD. The benefit of the reclassification is that it will be easier to determine the genetic basis of hEDS. Because the number of people and specificity of diagnosis will be narrowed, the number of genetic differences will be reduced. The abnormalities common to hEDS sufferers will be easier to find.
What does this mean for the EDS aromatherapy study?
In short, anyone diagnosed with EDS subtypes I or III, hEDS or cEDS, or HSD will be considered. Because this study is interested in EDS-related pain (and anxiety) due to joint hypermobility, those criteria and diagnoses are important. Regardless, the survey information will be helpful even if you have one of the older diagnoses.
I don't diagnose, and can't differentiate between the diagnoses done at specific times in EDS "history". The study will be published with these caveats.
Criteria for inclusion in the study (who will get the study materials and follow study protocols)
Study inclusion criteria: over 18 years old with a diagnosis of Ehlers-Danlos Syndrome classical or hypermobility types or hypermobility spectrum disorders, and willingness to participate in the study.
Exclusion criteria: undiagnosed symptoms, under 18 years old, outside the United States, previous adverse reaction to essential oils, allergy to any of the study materials.
This DOES NOT mean if you don't meet the study criteria that I don't want your survey information. All of the survey information helps me make the case for the importance of EDS research.
Please fill out the intake survey and from those entries, I will contact those who meet the criteria to coordinate the next steps.