Genetic and hereditary syndromes

Marfan Syndrome

A genetic condition affecting connective tissue, impacting the heart, blood vessels, bones, joints, and eyes.
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About

Marfan syndrome is a genetic condition that affects the body’s connective tissue, which supports organs and structures. It can impact the heart, blood vessels, bones, joints, and eyes. People with Marfan syndrome are often tall and thin with long arms, legs, fingers, and toes, and may have joint or heart issues.

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

  • Fatigue or pain due to joint and muscle problems
  • Risk of heart complications from physical exertion
  • Limited ability to perform heavy lifting or repetitive tasks
  • Vision problems that affect reading or screen work
  • Need for time off for medical appointments or treatments
  • Anxiety about health, especially cardiovascular health

Practitioner Help

  • Assist with identifying safe, suitable roles that avoid physical strain
  • Advocate for accommodations like seated work or ergonomic support
  • Help plan schedules to manage fatigue and appointments
  • Support self-advocacy and health disclosure decisions
  • Encourage breaks and pacing strategies to manage stamina

Common Accommodations

  • Light duties or alternatives to manual labour
  • Time off for regular medical check-ups
  • Screen magnifiers or text-to-speech tools for vision problems
  • Ergonomic chairs and workstations
  • Flexible working hours or part-time work
  • Adjustable temperature controls for conditions sensitive to heat/cold
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Notes

Marfan syndrome varies widely between individuals. With awareness and thoughtful support, many people with Marfan syndrome can work successfully in diverse roles, especially where physical strain is minimal.

February is Marfan Awareness Month

Resources

  • Marfan syndrome | healthdirect
  • Marfan syndrome | Better Health Channel
  • Marfan syndrome - Symptoms and causes - Mayo Clinic
  • Marfan Syndrome - Marfan Foundation
Genetic and hereditary syndromes

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