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What to Expect

What to Expect

Marfan syndrome and related conditions can cut lives short, particularly when they go unchecked, and they deeply affect the quality of life of the individuals and families coping with the conditions. That’s why it’s important to get an appropriate diagnosis, learn about the recommended treatments, and take special precautions for physical activity and other situations, like pregnancy.

While living with these conditions requires multiple doctor appointments, regular monitoring, and special tests, you can live a long, productive life.

Getting Diagnosed

An early, accurate diagnosis is essential, not only for people with Marfan syndrome, but also for those with related conditions.


If you have Marfan syndrome or a related condition, there are medications and surgeries to help you avoid the most serious complications.

Emergency Preparedness

Think about what you would do if a health emergency put you in danger. Would you know how to help yourself and your family? Each of us can take steps to reduce our risk in any kind of emergency. Plan to be prepared so you can stay safe. 


Decisions about family planning can be difficult and very emotional when one of the prospective parents has a genetic disorder, such as Marfan syndrome. Before making any decisions, parents should understand the many options now available, as well as the potential risks to the child and the mother. A genetic counselor can discuss the options with you and provide insights.