Know the Signs, Fight for Victory

Living With Marfan Syndrome

Learning you or someone in your family has Marfan syndrome can deeply affect the quality of life of the individuals and families coping with it. That’s why it’s important to get an appropriate diagnosis, learn about the recommended treatments, be prepared for surgery and take special precautions for physical activity and other situations, like pregnancy.

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

Getting Diagnosed

A Marfan diagnosis can often be made after exams of several parts of the body by doctors experienced with connective tissue conditions. Genetic testing can also provide helpful information in some cases.


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


Decisions about family planning can be difficult and very emotional when one of the prospective parents has a genetic condition, 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.

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