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Your teen and Marfan or a related disorder

Not everyone with Marfan syndrome or a related disorder is diagnosed as a child. Teens that are nearly diagnosed may react differently than a younger child and are likely to have more questions. Some questions may include:

How did I get Marfan syndrome?

Will I die early from Marfan syndrome?

Should I tell people about my disorder?

Do I have to stop playing sports?

How will Marfan syndrome affect me in the future?

It is important to discuss the physical activity guidelines with your teen. Having Marfan syndrome or one of the related disorders, means it is important to change activity levels and activities. This is important to protect heart and blood vessels, as well as eyes, bones, and joints. If your teen was physically active before being diagnosed, this can mean a major change in their life. Understanding the reasons for the physical activity limitations can help them accept and find new ways to be active. In general, they should avoid competitive sports to eliminate situations that are very intense and that can elevate blood pressure and heart rate. Contact sports should also be avoided because the inevitable collisions can damage eyes, bone, and joints.

The good news is that everyone can—and should—be active. For example, ride a bike leisurely, but avoid racing. Competitive basketball can place a lot of stress on the heart and blood vessels, but shooting hoops in the driveway or in a gym is fine because it is low intensity. A good way to measure intensity is to check heart rate and keep it below 100 beats a minute during prolonged activity. You should also be able to carry on a conversation while you are exercising without the need to take a breath in the middle of a short sentence. This is a link to more information about physical activity guidelines that may be helpful.

Your teen needs to connect with other people their age who are going through a similar situation. CONNECT, created by The Marfan Foundation, is an online community that offers chat rooms, videos, forums and other ways to connect with people their age. Teen Space on our website addresses some the common concerns and questions that teens have and features a downloadable Teen Resource Guide. Marfan Teens also have a presence on Facebook, Twitter, Snapchat and Instagram. The members of the Teen council are always available to connect with your teen and provide peer support and encouragement.

Concerned about your teen’s future; college, careers, families can be challenging and daunting for every teen.  Thinking ahead and planning, based on their strengths and weaknesses, is the best formula for success. There are plenty of avenues for success. But there are things that they can’t (or shouldn’t) do, such as a job that requires heavy exertion or lifting, such as construction work. In addition, training for the military, police, or fire department is too strenuous, as are professional sports. Many teens in our community make their college choice based on access to doctors experienced with Marfan syndrome. If this is important to you and your teen, it can certainly be accomplished as there are Marfan specialists in many parts of the country.

Reviewing this information and watching the videos may be helpful for both you and your teen.