Marfan Syndrome:

INTRODUCTION
INTRODUCTION AND
OVERVIEW OF MARFAN SYNDROME 1
Marfan syndrome affects an estimated 200,000 men, women and children
in the United States regardless of sex, race or ethnicity. It affects the heart,
eyes, lungs, bones and other parts of the body and is potentially lifethreatening.
Living with a serious medical condition is not easy for anyone, but dealing
with it during childhood can be particularly challenging. As demonstrated
by the thousands of inquiries received by the National Marfan Foundation
(NMF) Information Resource Center, parents of children with Marfan
syndrome experience a great deal of anxiety about sending their children
to school. They are concerned that teachers are not adequately equipped
to deal with their child’s special needs. Typical activities of childhood can
be profoundly affected by the disorder, with school-based activities such
as recess, the pressures of social relationships and rigors of classroom
participation made more difficult and sometimes overwhelming.
Many children with Marfan syndrome suffer from low self-esteem because
they look “different” and are unable to participate in many of the activities
of their peers, reinforcing intense feelings of isolation. Physical limitations
can require special accommodations at school to ensure that children
receive the education to which they are entitled. An adaptive physical
education plan is a necessity.
This resource will provide teachers with the information and tools they
need to:
• Know the basics of Marfan syndrome and its impact on the child.
• Provide necessary educational and classroom accommodations
to ensure the best learning environment for students with Marfan
syndrome.
• Create a supportive environment for students with Marfan
syndrome.
• Develop lesson plans to incorporate an understanding of Marfan
syndrome and/or genetic diversity into the classroom.