Marfan Syndrome Factsheet (for Schools)

What Teachers Should Know

Marfan syndrome is a genetic condition that affects connective tissue. Connective tissue provides structure and support for organs, blood vessel, bone, joint, and muscle in the body. Marfan syndrome can lead to problems in many parts of the body, especially the heart, lungs, eyes, and bones.

There's no cure for Marfan syndrome. But doctors can successfully treat almost all the problems it may cause. The syndrome affects different people in different ways, but Marfan syndrome does not affect learning.

People with Marfan may:

• be taller than expected for their family
• have a slender build, as well as long, thin fingers and toes
• have a long, thin face with deep-set eyes
• have crowded teeth
• have scoliosis and chest deformities
• be nearsighted or have other vision problems

Students with Marfan syndrome may:

• need adjustable seating for their height or other adaptive or assistive equipment
• need to sit in the front of the classroom due to vision problems
• miss class time to go to medical appointments
• need extra time for classroom assignments and homework
• need to restrict physical activities and lifting
• feel anxious or depressed or have low self-esteem because they look different from their classmates
• be at risk for bullying
• benefit from having an individualized education plan (IEP) or 504 education plan

Physical activity is an important area of concern. Students with Marfan syndrome:

• can't play some types of competitive or contact sports at their usual level — like football, soccer, basketball, baseball, gymnastics, weightlifting, volleyball, and track. This is due to the strain they place on the heart and lungs and the potential risk of a blow to the chest. An adaptive physical education plan, though, can let them participate at their own level.
• can and should do safe types of physical activity. Low-impact activities — like non-competitive bike riding, swimming, dancing, and walking — can help them get the exercise they need. Doctors will help students know what physical activities they can do.
• should wear a medical alert bracelet and have a care plan in place