 |
Port Washington, NY, January 24 - A new children’s picture book, Marfan Syndrome A to Z, is now available from the National Marfan Foundation. The book features vivid illustrations of diverse children and families with Marfan syndrome, a potentially fatal genetic disorder. The purpose of the book is to normalize a child’s experience with the disorder while providing educational opportunities and a gateway for conversation between parents and children.
Marfan Syndrome A to Z was funded by the American Legion Child Welfare Foundation. Under a $25,000 grant, children with Marfan syndrome can obtain a book for free (while funding allows). Others can order the book for $10, which includes shipping and handling. To obtain a copy, log on to the NMF website.
Marfan Syndrome A to Z was illustrated by Lori Mitchell, a San Diego-based artist whose father was affected by Marfan syndrome. Lori is best known for Different Just Like Me, a book she wrote and illustrated, which won many awards and was featured on Oprah!
The characters in Marfan A to Z are real doctors and families dealing with Marfan syndrome. Lori met many of them at the National Marfan Foundation’s Annual Conference at Stanford University in July 2007, where she did the research to draw pictures that would accurately depict Marfan syndrome.
In addition to its educational value, the book is fun for children. On the page for each letter, there are numerous hidden objects that start with the same letter. Readers are challenged to find those, too, as they read through the book. A glossary provides explanations of medical terms featured in the book.
Marfan Syndrome
Marfan syndrome is disorder of connective tissue, which holds all parts of the body together (it is sometimes called “the glue that holds the body together”). Because connective tissue is found throughout the body, the features of Marfan syndrome can occur in many different body systems, including the heart, blood vessels, bones, joints, and eyes. Sometimes, the lungs and skin are also affected. Marfan syndrome does not affect intelligence.
People with Marfan syndrome are frequently tall, with disproportionately long arms and legs and extreme flexibility. Other skeletal features are an indented or protruding chest bone and curved spine. Eye problems include a detached retina. The most life-threatening aspect of Marfan syndrome is its effect on the aorta, the large blood vessel near the heart, which is prone to enlarge. Lifestyle adaptations, medications and, sometimes, surgery are required to ensure that the aorta does not tear or rupture.
About three-quarters of affected people inherited the condition from a parent. In approximately 25 percent of cases, the condition occurs spontaneously. Marfan syndrome is an autosomal dominant condition, meaning that an affected parent has a 50-50 chance of passing to a child.
The National Marfan Foundation
The NMF was founded in 1981 to provide accurate and timely information about the disorder to patients, family members and physicians; to serve as a resource for medical information and patient support; and to support and foster research.
For more information on Marfan syndrome or related disorders, contact the NMF at 800-8-MARFAN or log on to www.marfan.org.
