About this profile
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.
Watch and listen
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
How to 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
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