Shani Weber, Patient and Community Advisor for the Ehlers Danlos Society recently talked to us about the role this international organization plays in educating people, including those in the medical community about Ehlers-Danlos syndrome (EDS).

EDSs are a group of connective tissue disorders often characterized by joint mobility, skin hyperextensibility, and tissue fragility. There are numerous subtypes of this condition, including:

  • Classical EDS (cEDS)
  • Classical-like EDS (clEDS)
  • Cardiac-valvular EDS (cvEDS)
  • Vascular EDS (vEDS)
  • Hypermobile EDS
  • Arthrochalasia EDS (aEDS)
  • Dermatosparaxis EDS (dEDS)
  • Kyphoscoliotic EDS (kEDS)
  • Brittle Cornea Syndrome (BCS)
  • Spondylodysplastic EDS (spEDS)
  • Musculocontractural EDS (mcEDS)
  • Myopathic EDS (mEDS)
  • Periodontal EDS (pEDS)

As Weber explains in this video, the more classical forms of EDS are characterized by skin hyperextensibility and generalized hypermobility but those symptoms are not always present, and may not be present in other subtypes. For example, persons with vascular EDS will have tissue ruptures, tears, or perforations in different organs as their major symptoms (e.g. arterial rupture at a young age, spontaneous sigmoid colon perforation, uterine rupture during pregnancy, etc).

Due to the subtle nature of the symptoms as well as the large variance, it can often take several years for people with EDS to be properly diagnosed, if they are diagnosed at all. According to Weber, it is estimated that up to 95% of people with EDS do not even know they have the disease.

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