- What is Duchenne muscular dystrophy and what causes it?
- What are the symptoms of Duchenne muscular dystrophy?
- How is it diagnosed?
- What is the prognosis?
- What is the risk for other family members or future babies?
- What treatments/therapies/medications are recommended or available?
- How can we tell our son about his DMD in a truthful, but not frightening way?
- My son is 19 and will be attending community college nearby. He doesn't want to wear diapers and won't/can't get anyone to help him go to the bathroom while he is at school. What can we do?
DMD is inherited in an X-linked recessive pattern. Males have only one copy of the X chromosome from their mother and one copy of the Y chromosome from their father. If their X chromosome has a DMD gene mutation, they will have Duchenne muscular dystrophy. Females, on the other hand, have two copies of the X chromosomes. Since females have two copies of this gene, if one copy does not work, they have a second back-up copy to produce the dystrophin protein. A woman who has a genetic change in one of her two copies is said to be "a carrier" of Duchenne muscular dystrophy. Carriers do not have Duchenne muscular dystrophy and most are unaware that they even carry this change in their genetic material unless they have a family history of DMD.
My son is 19 and will be attending community college nearby. He doesn't want to wear diapers and won't/can't get anyone to help him go to the bathroom while he is at school. What can we do?
Duchenne and Becker Muscular Dystrophy (Genetics Home Reference)
Discussion on genetics of two major types of muscular dystrophy; sponsored by the National Library of Medicine.
Duchenne Muscular Dystrophy (MedlinePlus)
MedlinePlus Medical Encyclopedia page with links to reliable information; National Library of Medicine.
Muscular Dystrophy (MedlinePlus)
Health Topic page with numerous links to reliable information; National Library of Medicine.
Muscular Dystrophy (CDC)
General information about MD for families that includes references to recent publications, extensive web resources, sites for kids, and genetic research for parents and families. Also includes current surveillance and research sponsored by the CDC to track incidence and treatment; Centers for Disease Control and Prevention.
Muscular Dystrophy (NINDS)
Offers general information for parents; National Institute of Neurological Disorders and Stroke (Division of NIH).
Learning about DMD (National Human Genome Research Institute)
Information for families with a focus on genetics.
Genetics in Primary Care Institute (AAP)
The goal of this site is to increase collaboration in the care of children with known or suspected genetic disorders. It includes health supervision guidelines and other useful resources; represents a collaboration among the Health Resources & Services Administration, the Maternal and Child Health Bureau, and the American Academy of Pediatrics.
Consumer Guide to Hospice (WashingtonPost)
A consumer guide to hospices that participate in Medicare, searchable by state and county.
Diagnosis & Management of DMD - Guide for Families ( 1.8 MB)
Care standards based on the DMD published in the Lancet Neurology in 2010; contains many images and graphics, uses much ink if printed.
FAQs about Wheelchairs (Parent Project, MD)
Answers to frequently asked questions about wheelchairs.
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|Author:||Lynne M Kerr, MD, PhD - 3/2012|
|Compiled and edited by:||URLEND Trainees, 2011-2012 - 3/2012|
|Content Last Updated:||9/2015|