Book Inspired by 13-Year Old Girl with Leukemia
Deerfield, Ill., April 25, 2000 -- Bone marrow transplants can be complicated and overwhelming, especially for pediatric patients. Fortunately, a new book, Me and My Marrow, is available to help guide kids through this difficult procedure.
The book was inspired by 13-year old Cristina Cuzzone of Northbrook, Illinois, who was diagnosed with leukemia at age nine and underwent a bone marrow transplant (BMT) to improve her health. After recovering from the transplant, Cristina recognized the need for a book to help guide other children through the procedure -- something she wished had been available for her.
"I didn't know what was going to happen when I had my bone marrow transplantation," said Cristina. "I wished someone had written this kind of book before, so I wouldn't have been so scared."
Cristina shared her story with a neighbor employed by Fujisawa Healthcare, Inc., a local pharmaceutical company. Cristina was encouraged to develop her idea and together Cristina and Fujisawa created and published the guidebook. "I'm glad I can pass on some of what I experienced to other kids undergoing the same procedure," she said. The book has been distributed to transplant centers nationwide.
Me and My Marrow explains what a transplant is, how it is done, what treatment will feel like, and how to cope during difficult times. The easy-to-read book is filled with colorful illustrations telling Cristina's story. Serving as a guide, Cristina offers personal anecdotes as well as practical advice from other kids who have been through a bone marrow transplant procedure. As Cristina shares her story, she encourages other BMT patients to share their time and talents by helping transplant patients in
their community.
"Understanding the procedure and treatment, and keeping a positive attitude, are very important factors when recovering from a bone marrow transplant," said David A. Margolis, MD, clinical director of the Pediatric Bone Marrow Transplant Unit at Children's Hospital of Wisconsin. "Me and My Marrow is an effective tool for providing patients and their families with facts about the procedure and recovery, as well as creative ideas for keeping busy and helping other kids."
The book is divided into three main sections: "Before Your Transplant," "During Your Transplant," and "After Your Transplant." It covers everything from getting the news, to coping with physical change, and resuming old friendships at school. Ideas are offered from Cristina and other patients on how to help kids cope with their BMT.
An interactive version of Me and My Marrow is available on the Internet at http://meandmymarrow.com. The site will continuously post stories and advice from pediatric patients about their experiences with BMT. The web site suggests videos, books, newsletters, and other web sites that are particularly helpful to BMT patients.
More than 60 diseases are treated with unrelated marrow transplants (an unrelated marrow donor is genetically similar to the recipient, but is not a blood relative). The diseases treated include: chronic myelogenous leukemia, acute lymphoblastic leukemia, acute myelogenous leukemia, myelodysplasia, non-Hodgkin's lymphoma, severe combined immunodeficiency syndrome, Fanconi's anemia, Hurler's syndrome, Hodgkin's disease, hemoglobinopathies, sickle cell anemia, thalessemia, and many other life-threatening blood diseases.
Although no definitive data exist, it is estimated that approximately 15,000 bone marrow transplants are performed in the United States each year. Of these transplants, it is believed that 2,000-3,000 cases annually involve the pediatric population.
Fujisawa Healthcare, Inc., headquartered in Deerfield, Ill., develops, manufactures, and markets proprietary pharmaceutical products in the United States and abroad. Fujisawa Healthcare, Inc., is a subsidiary of Fujisawa Pharmaceutical Co., Ltd., based in Osaka, Japan. Fujisawa Pharmaceutical Co., Ltd., founded in 1894, is a leading pharmaceutical manufacturer and is actively developing its international operations in North America, Europe, and Asia. Additional information on Fujisawa Healthcare, Inc., and its products can be found on the Internet at http://www.fujisawa.com.