Marfan Syndrome Factsheet (for Schools)
What Teachers Should Know
Marfan syndrome is a rare genetic disorder that weakens connective tissue. Connective tissue provides structure and support for every organ, blood vessel, bone, joint, and muscle in the body. Marfan syndrome can lead to problems in many parts of the body, especially the heart, eyes, and bones.
There's no cure for Marfan syndrome, but doctors can successfully treat just about all of its associated problems. The syndrome affects different people in different ways, but Marfan syndrome does not cause learning disabilities.
People with Marfan may:
- be taller than normal
- have a lean, lanky build, as well as long, thin fingers and toes
- have a long, thin face with deep-set eyes
- have a small jaw or 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 visual impairments
- miss class time due to medical appointments
- need additional 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
What Teachers Can Do
Physical activity is an important area of concern. Students with Marfan syndrome should not participate in certain competitive or contact sports — like football, soccer, basketball, baseball, gymnastics, weightlifting, volleyball, and track — due to the strain they place on the heart and lungs and the potential risk of a blow to the chest. However, an adaptive physical education plan can allow students with Marfan to participate at their own level.
Students with Marfan shouldn't skip 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 determine what physical activities are appropriate.
Students with Marfan syndrome should wear a medical alert bracelet and have a care plan in place.