Know the Signs, Fight for Victory

  • Heart and Blood Vessels

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  • Bones and Joints

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  • Eyes

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  • Lungs

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  • Nervous System

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  • Teeth

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Physical Activity Guidelines

Regular exercise improves both physical and emotional well-being and can be incorporated safely into the routine of people with Marfan syndrome. Each person should discuss their physical activity with their doctor to ensure they are exercising safely. 

  • Why does physical activity have to be modified for people with Marfan syndrome?

    Marfan syndrome affects the connective tissue, which holds all parts of the body together and helps control how the body grows. Because connective tissue is found throughout the body, Marfan syndrome features can occur in many different parts of the body, including the heart, blood vessels, bones, joints, and eyes. Sometimes, the lungs and skin are also affected. Physical activity guidelines are important because they enable people to achieve the benefits of safe levels of exercise and, at the same time, ensure that they don’t add to medical problems related to Marfan syndrome.

  • What should you know about physical activity if you have Marfan syndrome?

    In general, most people living with Marfan syndrome should exercise regularly through low-intensity (aerobic), low-impact activities adapted to meet their specific needs.

    Nearly every activity can be done at different intensity levels, and no recommendation holds true in all circumstances. it is essential for each person with Marfan syndrome to discuss physical activities and specific activity levels with his or her physician so that exercise can be incorporated safely into the regular healthcare routine. This should be an ongoing conversation with your doctor as you age because your medical status can change.

  • What do doctors worry about in regard to physical activity?

    Competitive and contact sports can put people with Marfan syndrome at increased risk of injury. Doctors worry about:

    • Increased heart rate, increased blood pressure, and bearing down because they can put added stress on the aorta.

    • Head impact that can damage the eyes directly or indirectly, through deceleration or acceleration, because this may lead to worsening lens dislocation or a retinal detachment.

    • Extensive stress on the bones and joints, which can lead to added pain and dislocations.

    • Bruising and internal hemorrhaging due to certain medications (i.e., anticoagulants).

Cindy Amdur – My Marfan Story

“I wouldn’t worry too much about the rapid heart beat, but you should look at this.” Those words began our adventures with Marfan syndrome. Our son Micah was five when an insightful pediatric cardiologist at the Alaska Native Medical Center in Anchorage identified an already enlarged aorta and suggested he might have Marfan.

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