PREFACE
Medical treatment is most effective when physicians and patients are well informed and function as a partnership. This is especially meaningful in a chronic disease which extends over a lifetime. Especially when children are affected, parents and other family members must be part of the team. Duchenne muscular dystrophy provides a classic example of the importance of this cooperative linkage. It requires long-term care by a variety of physicians, specialists and therapists. Additionally, other special needs, including day recreation programs, summer camps and psychosocial support, must be addressed.
MDA recognizes this and over the past half-century has been heavily committed to professional and public education. Besides medical conferences and seminars, we conduct many programs directed at public health education, many geared specifically for Duchenne patients and their family members.
This guide has been carefully and painstakingly prepared to offer you the most comprehensive, accurate and readable compendium on Duchenne muscular dystrophy. The index will permit ready access to desired information. The list of community resources and government and voluntary agencies should help ensure that families obtain every available benefit.
Production and distribution of Journey of Love: A Parent's Guide to Duchenne Muscular Dystrophy was made possible by a generous personal contribution from a member of MDA's 1998 Board of Directors.
It's our belief that this family manual is unique, one of very few comprehensive publications for any specific medical condition. It's offered to you with a sense of great pride.
Leon I. Charash, M.D.
Chairman, MDA Medical Advisory Committee
Associate Clinical Professor of Pediatrics
Cornell University Medical College
ACKNOWLEDGMENTS
Many people helped the Muscular Dystrophy Association Publications Department prepare Journey of Love. For their professional medical guidance, we're deeply grateful to:
- Dr. Gregory Carter, co-director of the MDA clinic at St. Peter's Hospital in Olympia, Wash.;
- Dr. Leon Charash, chairman of MDA's Medical Advisory Committee;
- Dr. Valerie Cwik, co-director of MDA's Mucio F. Delgado Clinic for Neuromuscular Disorders, University of Arizona Health Sciences Center in Tucson; MDA research grantee; and a member of MDA's Medical Advisory Committee;
- Dr. Stanley Johnsen, co-director of the MDA clinic at St. Joseph's Hospital and Medical Center in Phoenix;
- and Dr. Lawrence Stern, medical consultant to MDA and co-director of the MDA clinic in Tucson, Ariz.
For their candid feedback and other assistance, we thank the individuals and families living with DMD who reviewed the material, particularly: Jonah Ash, Kathy Moriarty, Suzan Norton, Vicente Rodriguez and his family, and Val Rudar.
We also acknowledge the contributions of the many individuals and families served by MDA who've shared their stories with MDA over the years. In addition, we appreciate the assistance of many other health-care professionals who provided help during the preparation of this guide.
DISCLAIMER
The contents of this document are not to be regarded as medical advice. Individuals should always consult with medical professionals when determining courses of treatment.
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