StudyRareStudyRare
Log in to add personal notes on this page.

A 25-year-old woman presents with chronic joint pain and recurrent dislocations. She has soft, mildly stretchy skin and scores 7/9 on the Beighton scale. She also reports POTS-like symptoms and functional GI issues.

Unknown (no gene identified); clinical diagnosis only

  • Likely polygenic/multifactorial
  • Generalized joint hypermobility (Beighton score)

  • Chronic pain, fatigue

  • Recurrent joint subluxations/dislocations

  • Mild skin hyperextensibility (less than cEDS)

  • Associated conditions: POTS, functional GI disorders, mast cell activation syndrome

  • Must exclude other heritable connective tissue disorders

Important: hEDS is the ONLY EDS subtype without a known gene - all other EDS subtypes have molecular diagnoses

  • Clinical criteria (2017 international classification)
  • Supportive, multidisciplinary care (no disease-modifying therapy)
  • Physical therapy emphasizing joint stabilization and low-impact strengthening
  • Pain management and bracing for recurrent subluxations
  • Treat associated conditions: POTS (volume/salt, compression), functional GI symptoms, mast cell activation syndrome