Hypermobile Ehlers-Danlos Syndrome (hEDS) & Hypermobile Spectrum Disorder (HSD)

Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) are inherited conditions that affect your connective tissue—the "glue" that supports your joints, skin, and organs. The hypermobile type (hEDS) is the most common form, but unlike other types, it currently has no genetic test and must be diagnosed through a clinical exam.

How is hEDS Diagnosed? Doctors use a three-part checklist to confirm hEDS: Assessing Joint Hypermobility the Beighton Scoring and 5-part questionnaire (EDS Society)

• The Beighton Score: A 9-point flexibility test checking your thumbs, pinkies, elbows, knees, and spine. Passing scores are 6+ for children, 5+ for adults under 50, and 4+ for those over 50.

• Body Traits & History: A search for signs like velvety-soft skin, a family history of hEDS, and chronic joint pain or instability.

• Exclusion: Ensuring other medical conditions aren't causing your symptoms.

What if I don’t meet the full hEDS criteria? If you have hypermobile joints that cause pain or frequent dislocations but you don’t fit the strict hEDS checklist, you may be diagnosed with HSD. The term "disorder" is used because your flexibility is symptomatic and affecting your health.

Quick Tools for You

• The 5-Part Questionnaire:  A fast screening tool where answering "yes" to 2 or more questions—such as "Can you now (or could you ever) touch your thumb to your forearm?"—strongly suggests you are hypermobile.

• The Spider Questionnaire:  Assesses symptoms people may have with hEDS / HSD

• Beyond Joints: It is vital to address "comorbidities" like Dysautonomia / POTS (racing heart) or Mast Cell Activation Syndrome (MCAS) that often occur alongside these conditions to improve your overall quality of life.

Helpful Video links on what are hEDS &HSD

• What Are EDS / HSD Playlist (YouTube)

• EDS & HSD Connection to Other Multisystem Disorders Playlist (YouTube)

• Management is often similar for both hEDS and HSD. Physical therapy can help build strength and stability for hypermobile joints. Energy conservation and pacing strategies help people balance activity and rest to avoid flare-ups. Many find that ergonomic supports, braces, or assistive devices provide extra joint protection during daily activities. Mind-body approaches — such as yoga, breathwork, or gentle movement — can help manage pain and improve body awareness.

• A multidisciplinary, supportive approach — combining physical therapy, occupational therapy, pain management, and mental health support — works best regardless of whether someone has an hEDS or HSD diagnosis.

Helpful Video links on treatment in hEDS &HSD 

• Basics of HSD/hEDS and self-care- Leslie Russek (59 min Video)

• Pain management in HSD/hEDS - Leslie Russek (56 min Video)

• Exercise progression in HSD/hEDS and POTS - Leslie Russek (56 min Video)

• Posture and Joint Protection in HSD/hEDS and POTS - Leslie Russek (63 min Video)

• Treatment in EDS / HSD Playlist (YouTube)

Helpful Handout links on treatment in hEDS &HSD 

• Leslie Russek Hypermobility Patient Handouts (Website)

• What Are EDS / HSD Extra Playlist (YouTube)

• Treatment in EDS / HSD Extra Playlist (YouTube)

• Connection to Other Multisystem Disorders Extra Playlist (YouTube)

• Basics of POTS and MCAD self-care - Leslie Russek PT (61 min Video)

• hEDS & HSD Extra video playlist (YouTube)

• Link to Dr Claire - Claire Francomano MD (YouTube channel)

• Link to The Ehlers-Danlos Society (Website)

• Leslie Russeks "Hypermobility 101" (Website)

• EDS - The EDS Clinic Learning Center (Website)

• Hypermobility - The EDS Clinic Learning Center (Website)

• Bendy Bodies Podcast - Linda Bluestein MD (Website)

• Elevation Wellness - Patricia Stott PT (YouTube channel)

• Movement & Exercise (M&BPC Website)

• Mindfulness Activities (M&BPC Website)