Emergency Alert Card
- tri-fold card that expresses the urgency of proper evaluation of chest/back/abdominal pain in the emergency room. Carry this with you to help ensure that ER personnel will take your concerns seriously in the event of an emergency.
Family Health History Template-
primarily a diagnostic tool, can be used to compile important health information about you and your family members to save time during early diagnostic appointments. Can also be used to determine other health risks not related to Marfan syndrome.
Emergency Information Packet Template
- be prepared in the event of an emergency by having all your personal medical information easily available in a single file. Includes emergency contacts, allergies, medications and dosage, medical and surgical history, healthcare proxy, etc.
Hospital Interview Form-
find out whether or not your local hospital is equipped to handle aortic emergencies by following this list of relevant questions about their services.
Marfan Syndrome: Need-to-Know Information for the Teacher
- A resource for teachers which provides basic information on Marfan syndrome, information on classroom accomodations Marfan students may require, physical activity guidelines and special information for the PE teacher, and classroom activities that can be used to educate students about Marfan syndrome and genetic disorders.
life-saving reminders to recognize, treat and prevent thoracic aortic dissection, a deadly tear in the large artery that carries blood away from the heart. Named for actor John Ritter, who died of a thoracic aortic dissection, Ritter Rules combine knowledge with action. Know the urgency, symptoms, who is most at risk and which imaging tests are required to diagnose this medical emergency.
Resources for Children and Teens
The NMF offers two special printed resources free of charge to families with affected children and/or teens thanks to the generous support of the American Legion Child Welfare Foundation, Marfan Syndrome A-Z and Marfan Syndrome: A Guide for Teens. The NMF also offers a third resource free of charge for families with affected children ages 8 to 12, Marfan Does Not Mean Martian, thanks to the generosity of NMF member and author of the book Elias Turner (see below).
Marfan Does Not Mean Martian
Marfan Does Not Mean Martian
is an inspirational story about Marvin, a boy diagnosed with Marfan syndrome, and the friendship he builds with his new neighbor Joe. The story educates children about Marfan syndrome while teaching them about diversity and acceptance. This book is appropriate for children ages 8-12 and is a great resource for children and families affected by Marfan syndrome as well as for school classrooms. The NMF is proud to be able to offer families Marfan Does Not Mean Martian
written by Elias Turner and illustrated by Alexandra Dubow. Elias Turner was diagnosed with Marfan syndrome in pre-school. Several of his family members are also diagnosed with the disorder. He wrote this book as a project for his biology class during his freshmen year of high school. Elias has generously allowed the National Marfan Foundation to make this book available to the Marfan and related disorders community. Click the image below to view an online version of Marfan Does Not Mean Martian.
To receive a free printed copy of Marfan Does Not Mean Martian click here.