Marfan Syndrome

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1 Introduction and Overview of Marfan Syndrome
INTRODUCTION 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. INTRODUCTION AND OVERVIEW OF MARFAN SYNDROME 1
Page 1 and 2: Marfan Syndrome: Need-to-Know Infor
Page 3: TABLE OF CONTENTS 1. Introduction a
Page 7 and 8: Features of Marfan syndrome Marfan
Page 9 and 10: 2 Special Needs of a Student with M
Page 11 and 12: Goals Both types of plans share the
Page 13 and 14: MEDICAL ISSUES, IMPACT ON THE STUDE
Page 15 and 16: Skeletal system continued Accommoda
Page 17 and 18: Pulmonary system Medical Issues •
Page 19 and 20: EMERGENCIES First and foremost, chi
Page 21 and 22: SOCIAL AND PSYCHOLOGICAL ISSUES Stu
Page 23 and 24: 3 Special Resources for the Physica
Page 25 and 26: Changes in connective tissue that c
Page 27 and 28: Classification of sports & activiti
Page 29 and 30: Guidelines and modifications for sa
Page 31 and 32: Musculoskeletal System The most obv
Page 33 and 34: Emergencies and how to recognize th
Page 35 and 36: Suggested physical activities and a
Page 37 and 38: Provide instruction in selecting ap
Page 39 and 40: 4 Additional Resources
Page 41 and 42: Marfan Syndrome Facts Continued fro
Page 43 and 44: How to Find Out if You Have Marfan
Page 45 and 46: CLASSROOM ACTIVITY: WORD SEARCH Mar
Page 47 and 48: CLASSROOM ACTIVITY: CROSSWORD PUZZL
Page 49 and 50: CLASSROOM ACTIVITY: WORD CLOUDS A
Page 51 and 52: PUBLICATIONS PRINT Marfan Does Not
Page 53 and 54: PUBLICATIONS ON CD Marfan Syndrome:
Page 55 and 56:
PUBLICATIONS ON DVD Marfan Syndrome
Page 57 and 58:
OTHER RESOURCES Understanding Genet
Page 59 and 60:
Living with Marfan syndrome III. Qu
Page 61 and 62:
PRODUCED BY The National Marfan Fou
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Marfan Syndrome

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