La sindrome di Marfan è una malattia grave e alcune complicazioni sono potenzialmente letali. Grazie ai progressi dell’assistenza medica, le persone affette da sindrome di Marfan possono avere una durata di vita normale se la malattia viene diagnosticata e trattata in modo appropriato.
This Parent Toolkit is a resource for parents of children with Marfan, Loeys-Dietz, VEDS, or another genetic aortic condition. It offers resources to help you deal with your child’s school, doctors, and healthcare, and guide you to additional resources for information and support.
Regular exercise improves both physical and emotional well-being and can be incorporated safely into the routine of people with Marfan syndrome. Therefore, they are encouraged to adapt health measures that protect them from Marfan features that can worsen and from medical conditions that are simply part of the aging process. With an early diagnosis, treatment, and lifestyle adaptations, many […]
Many people with Marfan syndrome and some related disorders have narrow jaws and high-arched palates, which can create dental and orthodontic problems. In addition, people with mitral valve prolapse and artificial heart valves are at risk for endocarditis (infection of the heart and heart valves) when they have dental work, and should follow recommendations for […]
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Join us in the fight for victory over Marfan syndrome and related conditions and help us create a brighter future for everyone living with these conditions.