VIDA LAB by Rowan Albritton
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musculoskeletal

Ehlers-Danlos Syndrome (Hypermobile Type)

A genetic connective tissue disorder causing joint hypermobility, chronic pain, and frequent dislocations.

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In this report
  1. Overview
  2. Symptoms
  3. Diagnosis
  4. Treatments
  5. Medical Resources
  6. Your Care Plan

Overview

Hypermobile Ehlers-Danlos Syndrome (hEDS) is the most common of the Ehlers-Danlos syndromes, a group of connective tissue disorders caused by defects in collagen production. Collagen provides strength and elasticity to skin, joints, blood vessels, and organs — when it's faulty, tissues throughout the body become fragile and overly stretchy.

hEDS causes joint hypermobility (joints that move beyond the normal range), joint instability, and chronic pain. It frequently overlaps with POTS and mast cell activation syndrome, forming a well-recognized symptom triad. Unlike other EDS subtypes, hEDS has no confirmed genetic marker, making diagnosis purely clinical.

The condition is likely underdiagnosed, especially in women, who are often told their joint pain is due to being "double-jointed" or unrelated anxiety. With proper physical therapy and joint protection, most people manage symptoms effectively, though severe cases can be significantly disabling.

Symptoms

  • Joint hypermobility (able to hyperextend joints beyond normal range)
  • Frequent joint subluxations or dislocations
  • Chronic joint and muscle pain
  • Soft, velvety, stretchy skin that bruises easily
  • Poor wound healing and abnormal scarring
  • Fatigue
  • Digestive issues (overlap with IBS/gastroparesis)
  • Dizziness on standing (overlap with POTS)
  • Anxiety (a recognized association, not a cause)
  • Early-onset osteoarthritis-like joint wear

Diagnosis

Diagnosis is clinical, based on the 2017 international diagnostic criteria:

  1. Beighton score — a 9-point test measuring joint hypermobility across fingers, elbows, knees, and spine
  2. Systemic manifestations — a checklist of associated features (skin, cardiac, musculoskeletal)
  3. Exclusion of other conditions — other EDS subtypes (which have genetic tests), Marfan syndrome, and other connective tissue disorders

Genetic testing does not confirm hEDS (no gene has been identified) but can rule out other EDS subtypes. A geneticist or rheumatologist familiar with EDS typically confirms the diagnosis.

Treatments

  • Physical therapy — the cornerstone of treatment. Strengthening muscles around unstable joints improves stability. Must be gentle and EDS-informed to avoid overstretching.
  • Joint bracing and taping — to support unstable joints during activity
  • Pain management — NSAIDs, and for chronic pain, medications used for central sensitization (similar to fibromyalgia)
  • Treating co-occurring conditions — POTS and MCAS management significantly improves overall quality of life
  • Low-impact exercise — swimming and Pilates-style strengthening rather than high-impact sports
  • Occupational therapy — for joint protection techniques in daily activities

Your Care Plan

A step-by-step guide to navigating your condition, from finding the right doctors to advocating for the care you deserve.

Step 1: Doctors to See

Start with: A geneticist or rheumatologist familiar with EDS to confirm diagnosis and rule out other subtypes.

Build your team:

  • Physical therapist experienced with hypermobility (not standard PT)
  • Cardiologist — to screen for POTS
  • Allergist/immunologist — if MCAS is suspected
  • Pain management specialist for chronic pain
  • Orthopedist — only for specific joint injuries needing intervention

Step 2: Advocate for Yourself

hEDS is frequently dismissed as "being flexible" or anxiety. Bring documentation of dislocations/subluxations and a Beighton score assessment if possible. Insist on referrals to EDS-informed physical therapists — generic aggressive PT can worsen symptoms. If you have dizziness or fainting, request orthostatic vitals to screen for POTS.

Step 3: Your Action Plan

  1. Get a Beighton score assessment from a doctor familiar with hypermobility.
  2. See a geneticist or EDS-informed rheumatologist for formal diagnosis.
  3. Start gentle, EDS-informed physical therapy focused on joint stabilization.
  4. Get screened for POTS and MCAS if you have dizziness, flushing, or GI symptoms.
  5. Use joint protection strategies (bracing, avoiding hyperextension) in daily life.
  6. Build a long-term low-impact exercise routine (swimming, Pilates).

Important: This report is educational information, not medical advice. Always consult a qualified healthcare professional for diagnosis and treatment decisions.

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