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Your child and Marfan or a related disorder

It is very important for children to be educated about Marfan at any and every age because knowing and understanding is always less frightening than what they are imaging. It is never too early to discuss Marfan syndrome with your child. Younger children tend to be more accepting of their disorder and are better able to cope.

While there is no “right” way to tell a young child that he or she has Marfan syndrome learning and talking about it from the beginning gives the child and the family more control. It is best that a child ears about how he or she is special from a parent or his/her own doctor. If a child has to have a lot of medical treatments, even surgery, explaining the medical reason helps even a young child understand why they are seeing several doctors. If the child isn’t having any medical problems, and just has yearly evaluations, parents still need to make it clear why those evaluations are necessary.

Here are some resources that may help you explain Marfan to your child.

Should I tell my child that he or she has Marfan syndrome?

How and when should I talk to my child about Marfan syndrome?

How can a child participate in their treatment?

How do people get Marfan syndrome?

How many people in the world have Marfan syndrome?

Why can’t people with Marfan syndrome play contact sports?

Why do people with Marfan syndrome have chests that stick in or out?

Why do most people with Marfan syndrome have big aortas?

What activities can people with Marfan syndrome do?

How did you introduce your child to Marfan syndrome?

How did your child take the news of the diagnosis?

What was the first year like?