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Physical Activity, Trips, Events

What you need to know

Marfan disease can cause a variety of problem and each child will be unique with problems and limitations. Most children with Marfan will need a custom designed exercise program. The child’s physicians and child’s parents should set parameters for exercise.  It is important for individuals with Marfan syndrome to have an opportunity for physical activity to optimize physical and mental health. 

If you live in New England (USA) and qualify, Northeast Passage offers Therapeutic Recreation and Adaptive Sports programming.

Learn more about bodily systems.

What you can do

Learn more about modifications and things to avoid.

Exercise modifications

  • Reduce the stress on the heart and major blood vessels by limiting activities involving endurance, weight lifting or intense competition
  • Minimize opportunity for head and chest trauma
  • Reduce stress on joints
  • Accommodate possible reduced lung capacity
  • Take care with all physical activity
  • Exercise to point of exhaustion should be prevented to avoid:
    • Increases in heart rate
    • Increase in blood pressure
    • Force of muscle contractions
    • Be aware of those individuals on a blood thinner; a forceful collision may result in a heavy bleed

General

  • Encourage academic and artistic activities
  • Allow child to help with coaching or team management if there are restrictions
  • Consider 504 for physical activity modifications

 Explore activities that are of interest to the child AND safe. What accommodations can be made to keep the child safe? Here are some examples of activities that might work for some children who have Marfan syndrome:

 K-3

  • Movement exploration activities

Grades 4-12

  • Archery
  • Pool activities
  • Board games
  • Bowling
  • Bicycling
  • Croquet
  • Dance/rhythms
  • Darts
  • Golf
  • Gymnastics (balance activities)
  •  Horseshoes
  • Relaxation exercises
  • Shuffle board
  • Walking
  • Aquatics/water activities