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Behavior & Sensory Support

What you need to know

  • Individuals with Marfan syndrome may look “different” than their peers.
    • Taller than average
    • Very skinny and lanky
    • Stretch marks
    • Scoliosis
    • Chest wall deformities
    • Foot problems.
  • Feeling as though they look different may affect self-esteem.
  • Back braces, and orthotics may further affect self-esteem and confidence. 
  • Individuals may be unable to participate in many activities, can lead to feelings of isolation
  • Individuals with Marfan syndrome may experience pain.
    • May be chronic may interfere with ability to focus or sit for long periods of time

 

What you can do

  • Allow privacy in changing if needed
  • Encourage discussions about differences and acceptance of differences within classroom
  • Provide explanation of the condition and how it affects individuals
  • Encourage participation in activities as appropriate
  • Allow access to nurse and medications as needed
  • May need to take breaks and/or rests