MDA ISSUES PARENT'S GUIDE FOR DUCHENNE MD
FOR IMMEDIATE RELEASE
TUCSON, Ariz., February 1999 -- The Muscular Dystrophy Association has published a new illustrated book, Journey of Love: A Parent's Guide to Duchenne Muscular Dystrophy, to help those raising children with DMD.
In his introduction to the book, MDA National Chairman Jerry Lewis tells parents, "MDA exists because it's dedicated to aiding families like yours."
Journey of Love is available free from local MDA offices to families with a member affected by Duchenne or Becker muscular dystrophy who is registered with the Association. Others can purchase the volume for $15 from local MDA offices or from MDA, 3300 E. Sunrise Drive, Tucson, AZ 85718; (520) 529-2000.
The comprehensive publication, with 180 pages, provides a rich variety of information, including sections on medical, social, educational and emotional issues. It also contains an extensive list of resources and information about MDA's programs.
Dr. Leon Charash, chairman of MDA's Medical Advisory Committee, calls the guide a much-needed resource. "This definitive book is what every family living with Duchenne needs. We want parents to know they are not alone in the battle," he said, adding, "It would be wonderful if all health organizations published books like this for those affected by specific diseases."
Duchenne (DMD) is the most common and most destructive childhood form of muscular dystrophy. It begins in early childhood, striking boys almost exclusively, and is usually fatal by the mid-20s.
Through its worldwide research program, MDA has discovered the genetic cause of DMD and is developing forms of gene therapy as potential treatments for the disorder. Across the country, thousands of youngsters with DMD are treated at hospital-affiliated MDA clinics.
The parent's guide describes the needs of boys with DMD for orthopedic equipment, physical and occupational therapy, cardiac and respiratory health care, medications and other medical interventions. It also delves into the child's emotional adjustment, effects of the disorder on other family members, help available through social service agencies and end-of-life issues.
Journey of Love presents the latest medical information about DMD and MDA's research on the disease. It also includes a list of the 230 clinics in MDA's nationwide clinic network, and addresses and phone numbers of some 180 local MDA offices.
Some sections may also be of interest to families affected by DMD's less severe variant, Becker muscular dystrophy.
Robert Ross, MDA senior vice president and executive director, in announcing the book's publication, said, "MDA continues to fund cutting-edge research that will soon lead to treatments and cures for neuromuscular diseases. In the meantime, we're committed to providing wide-ranging assistance to families facing these disorders via many avenues, including this thorough parent's guide."
In 1997, MDA issued another book-length guide for caregivers, When a Loved One Has ALS, for those caring for people with amyotrophic lateral sclerosis (Lou Gehrig's disease). It's available from MDA offices for $10.
MDA is a voluntary health agency working to defeat 40 neuromuscular diseases through programs of worldwide research, comprehensive services, and far-reaching professional and public health education. The Association's programs are funded almost entirely by individual private contributors.
The American Medical Association has honored MDA with a Lifetime Achievement Award for "significant and lasting contributions to the health and welfare of humanity."
More information about MDA is available by calling the Association's nationwide help line at (800) 572-1717 or checking MDA's Web site at www.mda.org.
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