Marfan syndrome is
a disease that cannot be cured, but it is possible to live a long and full life
with the disease if proper treatment and management is followed. Each case is
different, depending on how severe or mild the symptoms are. Lifestyle
adjustment and thorough regular monitoring of the disease by specialist
(depending on the affected body) are important.
Medical surveillance:
Urgent intervention is required in the emergency event of lung collapse or sudden severe pain in the eye or heart.
Some drugs reduce the risk of worsening symptoms, but they cannot eliminate the nature of the disease:
Lifestyle changes are mostly associated with a reduction of physical activity at work and leisure.
People with Marfan syndrome should avoid activities, jobs and contact
sports that lead to violent head and body movements, jumps, straining, pushing,
lifting heavy objects.
People with MFS are often tall and busy and can be disproportionately encouraged to compete in sports without knowing the danger. Competition and contact sports are potentially dangerous due to vascular weakness, heart valve, eye and skeletal problems. Physical activities should be assessed individually for each person with MFS.
Sports such as boxing, wrestling, weightlifting, football, hockey, basketball, water skiing, jumps are generally prohibited. Due to the risk of lung collapse, activities where rapid changes in atmospheric pressure (eg deep diving, flying in open air) are avoided. Joint hypermobility causes some exercises and sports to be avoided or at least limited to a minimum. Swing exercises and sports that increase the range of motion are generally prohibited (ballet, gymnastics, aerobics). Pulling respectively stretching exercises are generally prohibited and such exercise should be addressed to specialists if necessary.
Non-competitive, isokinetic, non-contact activities are recommended that do not involve contact with the tool, teammate, or require a sudden stop or rapid change of direction. Lighter exercise, recreational swimming, light cycling or slow jogging, on the other hand, are suitable for maintaining muscle tension and good cardiovascular function. Systematic movement training with muscle strengthening is recommended, even if the muscle volume never reaches a degree that would match the effort. Movement diversity and respect for natural movement are generally more sensible than sophisticated exercise systems. Resistance exercises are indicated to a reasonable degree. Instead of using dumbbells, it is preferable to use a resistive spring or more preferably an elastic material that imparts a more or less constant resistance over the entire range of movement performed. The pulse should not exceed 110 bpm. If fatigue occurs, you should stop.
The Marfan Association in the US has developed the guidelines for performing physical activities in MFS >>>.
Parents, teachers and educators should be instructed about possible obstacles to learning with Marfan syndrome such as blurred vision, despite glasses, motion disorder, often low self-confidence, physical limitations and sometimes adverse drug effects. The pupil should sit in front of the blackboard or have printed materials available. In Marfan syndrome, a common problem is the fatigue of the body, especially at prolonged concentration. If a child has problems with fine motor skills, they can use a coarser writing tool, computer, and oral exams. In physical education it is necessary to reduce or eliminate inappropriate activities. Do not stay in one position for a long time, such as a long sitting at a computer, but also for example at school desks. You need to change your location more often.
Our association created a brochure written in Slovak language "Children with Marfan Syndrome in the kindergarten and at the school". The brochure contains advices and information for parents and teachers. Range is 31 pages. If you are interested, you can ask for it >>>.
Food diet and special dietary supplements do not cure the disease, but the patient needs a quality and nutritious diet. Restricting a certain type of food may have a detrimental effect. In addition to sufficient intake of various vitamins and minerals, vitamin D is also of importance for Marfan syndrome. Smoking is not recommended as it damages elastin, which is still inadequate in patients.
Parents need to consider the 50% risk that a child can inherit Marfan syndrome from the affected parent (father or mother). In addition, if the mother is affected, careful consideration should be given to the potential risk to the mother itself. The level of risk depends on the severity of the organ involvement. Aortic pregnancy up to 4.4 cm could be planned after consultation with a cardiologist. After aortic surgery pregnancy in MFS patients should be excluded. Pregnancy should be monitored at a higher specialized workplace in close cooperation with the obstetrician and cardiologist. In some cases, birth is also possible by the natural (vaginal) route if the cardiovascular apparatus is in good condition. However, if the aorta is dilated or there are other complications, delivery is by caesarean section.
Please note: Information on this site is not a substitution for the professional healthcare. They are for informational purposes only and may not be used for treatment, prevention or diagnosis without the previous consultation with the physician.