Genetic and hereditary syndromes

Ehlers-Danlos Syndrome

A genetic condition causing stretchy skin, flexible joints, and fragile tissues, impacting daily life.
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About

Ehlers-Danlos Syndrome (EDS) is a group of 13 genetic disorders that affect the connective tissues, which support the skin, bones, blood vessels, and organs.

People with EDS have hyperelastic (stretchy) skin, joint hypermobility (overly flexible joints), and are more prone to bruising and injury.

This condition is often invisible.

Many disabilities, including this one, may not have outward signs—people can be significantly impacted even if they appear “fine” on the outside.

Common Challenges

  • Joint pain and instability
  • Fatigue and weakness
  • Frequent dislocations and sprains
  • Difficulty standing or walking for long periods
  • Sensitivity to touch and minor injuries
  • Managing physical tasks or heavy lifting
  • Need for frequent medical appointments
  • Sensory issues affecting focus or concentration
  • Fluctuating abilities (some days better than others)

Practitioner Help

  • Assess the participant's strengths and limitations
  • Help with finding suitable work that matches abilities and preferences
  • Suggest flexible work hours or part-time positions
  • Advise on ergonomics to reduce physical strain
  • Recommend assistive devices (e.g., braces or mobility aids)
  • Offer guidance on managing energy levels and pacing activities
  • Provide emotional support to cope with challenges
  • Connect the participant with workplace training or mentorship programs
  • Work with employers to create a supportive and understanding work environment

Common Accommodations

  • Adjustable workstations to reduce strain
  • Flexible work hours (for managing health conditions)
  • Regular breaks to avoid fatigue
  • Assistance with lifting, carrying, or other physically demanding tasks
  • Modified work tasks to minimize risk of injury
  • Flexible working hours or part-time work
  • Provision of mobility aids (e.g., chairs, cushions, walking supports)
  • Access to physiotherapy during work hours
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Notes

EDS is a lifelong condition, and managing it at work requires understanding, flexibility, and support. It’s important for individuals with EDS to have access to tailored support and accommodations to ensure they can thrive in their employment.

May is Ehlers-Danlos Syndrome Awareness Month.

Resources

  • Ehlers-Danlos syndrome | healthdirect
  • Ehlers-Danlos Australia
  • EDS Australia National Support Group - The Ehlers Danlos Society
  • Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder | Sydney Local Health District
Genetic and hereditary syndromes

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