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Physical Activity Guidelines
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Prepared by the NMF Professional Advisory Board
Exercise is important for people with Marfan syndrome. It instills a sense of physical and psychological well-being, improves exercise endurance, lowers blood pressure, reduces weight, regulates metabolism and gastrointestinal function, increases bone density and physical strength, and often leads to beneficial lifestyle changes, such as smoking cessation, moderation of alcohol consumption and improved nutrition.
People with Marfan syndrome and their families, as well as physical educators and healthcare professionals charged with overseeing the physical activity of people with Marfan syndrome, should be aware of the following: - Changes in connective tissue that give rise to the medical problems of Marfan syndrome.
- Different forms of exercise and their impact on Marfan syndrome.
- Basic guidelines for physical activities that should enable people with Marfan syndrome to participate safely.
What are the changes in connective tissue that cause Marfan syndrome?
What are the differences among forms of exercise and competition?
Classification of Sports & Activities
What if a person is taking medication?
What are some guidelines and modifications that permit safer exercise for people with Marfan syndrome?
What are the changes in connective tissue that cause Marfan syndrome?
Marfan syndrome is a genetic disorder that affects the body’s connective tissue. Connective tissue is found throughout the body and has various functions; it serves as the glue and scaffolding of all cells, giving structure and shape to organs, muscles, blood vessels and, in turn, the entire body.
One of the many ingredients of connective tissue is a protein known as fibrillin. In Marfan syndrome, a diversity of problems occur in fibrillin, all caused by genetic mutation. As a result, the structure it provides to the body is weaker than normal. Because of this inherent weakness, some modifications in exercise are required in affected individuals. There is variation in the weakness of tissue among individuals, particularly in the wall of the aorta, the ligaments, the joints and the eyes; therefore, recommendations can be tailored to some degree.
What are the differences among forms of exercise and competition?
Exercise can be classified by a number of characteristics. Aerobic activities are conducted at an intensity that permits oxygen to be used to generate energy. There is a balance between the needs of the muscles and the ability of the body to provide oxygen to the muscles. If you can carry on a conversation while you are exercising, you are at an aerobic level.
In an anaerobic activity, there is insufficient oxygen, and cells have to rely on internal sources, which become depleted quickly, leading to fatigue. Anaerobic activity is usually of higher intensity, and is thus more stressful to tissues and the cardiovascular system.
When a muscle contracts through much of its full range of motion, such as the arm muscles when throwing a ball and the leg muscles when running, the exercise is called isokinetic. When the muscle is contracting without moving, such as when straining to lift a heavy weight or pushing a heavy piece of furniture, the exercise is called isometric. An increase in blood pressure, which stresses the heart and aorta, is greater with isometric exercise.
Most exercises and athletic activities involve combinations of isokinetic and isometric muscle work and aerobic and anaerobic energy use. The proportion of work and energy is determined by the nature of the activity, how strenuously a person is participating and, in team sports, even the position being played.
Sports are classified based on the risk of collision (contact) and on how strenuous they are. The following table shows one classification scheme.
Classification of Sports & Activities
Before you apply this chart to your specific situation, it is important to realize that many sports can fall within several categories, depending on the intensity of your participation. It is essential to talk to your doctor about the sports and activities that are safe for you, and how to monitor your exertion level so that exercise remains safe throughout your involvement. The following table is modified from a classification devised by the American Academy of Pediatrics: Contact/collision high potential:strenuous | basketball,
boxing, field hockey, football, ice hockey, lacrosse martial arts, rodeo, skiing (water) soccer, wrestling | Limited contact: strenuous | baseball, bicycling (intense) gymnastics, horseback riding, skating (ice & roller) skiing (downhill & cross-country) softball, squash, volleyball | Noncontact: strenuous | aerobic dancing (high impact) crew, running (fast), weightlifting | Noncontact: moderately strenuous | aerobic dancing (low impact), badminton bicycling (leisurely), jogging, swimming (leisurely) table tennis, tennis | Noncontact: nonstrenuous | golf, bowling riflery, walking |
People with Marfan syndrome should always avoid contact sports because of the risk of damaging the aorta and injuring the eyes. Strenuous activities also should be avoided because of the stress placed on the aorta. Every activity has gradations, and no recommendation holds in all circumstances. For example, shooting baskets in the driveway is different from playing a full-court basketball game, and bicycling 10 miles in one hour on a level course is different from competing in a triathlon. To maximize safety of low intensity, non-contact activities, it is important to take necessary precautions, such as not carrying a heavy bag of golf clubs, and to avoid intense competitive efforts. In short, it is essential for each individual with Marfan syndrome to discuss physical activities, and specific activity levels, with his or her physician(s) so that exercise can be incorporated safely into the regular healthcare routine.
What if a person is taking medication?
Before beginning or increasing any exercise program, it is important to assess your current level of physical fitness, your health and your medications. The advice offered here is general, and is not meant to substitute for the recommendations of your personal physician.
Many people with Marfan syndrome take a beta-blocker medication to reduce stress on the aorta. This medication lowers the pulse at rest and with exercise, and makes it somewhat more difficult to achieve a given level of physical fitness for the amount of physical work performed. Beta-blockers do permit a person to improve their endurance and strength while protecting the aorta. They do not, however, allow a person to perform very strenuous exercises or to play contact sports.
People who have artificial heart valves usually take an anticoagulant medication, Coumadin®. This medication interferes with blood clotting and increases the chances of bruising and internal hemorrhages. People taking Coumadin should avoid contact sports and any activity with a moderate risk of a blow to the head or abdomen. High-quality helmets should always be worn while bicycling.
What are some guidelines and modifications that permit safer exercise for people with Marfan syndrome?
Physical activity modifications for people with Marfan syndrome include the following: - Favor non-competitive, isokinetic activity performed at a non-strenuous aerobic pace. Especially suited are sports in which you are free to rest whenever you feel tired and in which there is a minimal chance of sudden stops, rapid changes in direction, or contact with other players, equipment or the ground. Some beneficial activities are brisk walking, leisurely bicycling, slow jogging, shooting baskets, slow-paced tennis, and use of 1-3 pound hand weights.
- Choose an activity you enjoy that you can perform three or four times per week for 20-30 minutes. If time is a major constraint, three 10-minute sessions are nearly as effective as one 30-minute session.
- Stay at an aerobic level of work (about 50% of capacity). If you are on a beta-blocker or verapamil, keep your pulse under 100 beats per minute. If you are not on a beta-blocker, keep your pulse at less than 110. Tip: It is often easier to feel the pulse over arteries in the neck than at the wrist.
- Take your time and choose your activities wisely. With everyday activities, ask for help, make several trips carrying parcels rather than loading yourself down, use your legs rather than your back to lift, exhale when lifting, and refrain from straining to do anything.
- Avoid activities that involve isometric work, such as weightlifting, climbing steep inclines and pull-ups. If you are using a stationary cycle or a step-climber, keep the tension low. Multiple repetitions with a low resistance or weight are better than a few repetitions with a larger weight.
- Do not test your limits. This is particularly difficult for children during physical fitness tests in school and for people who once were competitive athletes. Be sure your child with Marfan syndrome has an adaptive physical education program in place.
- Avoid activities that risk rapid changes in atmospheric pressure, such as scuba diving and flying in unpressurized aircraft. People with Marfan syndrome are prone to collapse of a lung.
Exercise is beneficial to both the physical and emotional well-being of people with Marfan syndrome. The average life expectancy of people with the disorder is now nearly 70 years, making regular gentle exercise an important general health measure. Most people with Marfan syndrome should exercise regularly through low-intensity, low-impact activities adapted to meet their specific orthopedic, cardiovascular and ophthalmologic requirements. Always consult your personal physician before beginning any exercise program or performing any activity that may be strenuous for you.
You may wish to print Physical Education Goals for Children with Marfan Syndrome and give it to the PE teacher.
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