Marfan syndrome is a disorder involving the tissue that holds your body together (connective tissue). Connective tissue has many important functions, including:

• Helping with growth and development of the body's cells, both before and after birth
• Holding certain organs together
• Protecting joints
• Helping light pass through the eye

Marfan syndrome and other connective tissue disorders can affect the movement and flexibility of several areas of the body, including:

• Blood vessels
• Bones and joints
• Eye
• Several other body systems 

Marfan syndrome is genetic. That means it is passed down from a parent to a child. It is also an autosomal dominant disorder. This means that each child of a parent with Marfan syndrome will have a 50% chance of also being born with the disorder. Also, when a child is born with Marfan syndrome, but their parents don’t have it, that child will have a 50% chance of passing the disorder to their children.

Specific treatment for Marfan syndrome will be decided by your child's doctor based on:

• Your child's age, overall health and medical history
• Extent of the disorder
• Your child's tolerance for specific medications, procedures or therapies
• Expectations for the course of the disease
• Your opinion or preference

Right now, there is no cure for the Marfan syndrome. Treatment is based on which organ systems are impacted. Managing Marfan syndrome may include the following:

• An annual scan of the heart (echocardiogram or echo)
• Regular eye exams
• Checking the skeleton for problems (such as scoliosis)
• Lifestyle adjustments to lower stress on the heart, such as no high intensity sports or exercise
• The use of antibiotics before dental procedures to reduce the chance a heart infection

Genetic counseling is important for people who have Marfan syndrome and want to have kids. If one parent has Marfan syndrome, there is a 50% chance that each child will also have the disorder. In addition, women with Marfan syndrome who get pregnant have higher health risks during pregnancy. This is due to the added stress that a pregnancy puts on the heart.

The Herma Heart Institute’s Marfan Syndrome and Connective Tissue Disorders Program is the largest in Wisconsin. It is known nationally for its expertise in caring for children and adults with rare genetic connective tissue disorders. We partner with our Adult Congenital Heart Disease Program to provide the best care long into adulthood.

Since children born to a parent with connective tissue disorder have a 50% chance of having the disorder, entire families often turn to Children’s Wisconsin for care. They trust our ability to provide the newest and best tests and treatments. Our team of experts make a treatment plan to meet your child’s and family’s physical, emotional and social needs.

Two specialists oversee all care and make referrals to other medical areas as needed. The team makes sure all health issues are taken care in an organized and convenient way. This includes nutrition, family education and all other areas. We all work together to provide the best care for children and their families.