- 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.
Duchenne/Becker 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, related NINDS publications, and a link to current research literature on MEDLINE; National Institute of Neurological Disorders and Stroke NINDS (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. Includes health supervision guidelines and other useful resources; a collaboration among the Health Resources & Services Administration, the Maternal and Child Health Bureau, and the American Academy of Pediatrics.
Consumer Guide to Hospice
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.
See all Assistive Technology services providers (104) in our database.
See all College Disability Centers services providers (17) in our database.
See all Developmental Pediatrics services providers (5) in our database.
See all Disability Employment services providers (172) in our database.
See all Disability/Diagnosis-Specific Advocacy services providers (111) in our database.
See all Early Intervention Programs services providers (52) in our database.
See all General Dentistry for Children services providers (151) in our database.
See all Hospice & Palliative Care services providers (69) in our database.
See all Muscular Dystrophy Clinics services providers (3) in our database.
See all Neuropsychology services providers (33) in our database.
See all Nutrition/Dietary services providers (53) in our database.
See all Occupational Therapy, Pediatric services providers (42) in our database.
See all Pediatric Cardiology services providers (3) in our database.
See all Pediatric Dentistry services providers (57) in our database.
See all Pediatric Endocrinology services providers (2) in our database.
See all Pediatric Neurology services providers (10) in our database.
See all Pediatric Orthopedics services providers (18) in our database.
See all Pediatric Physical Medicine & Rehab services providers (8) in our database.
See all Pediatric Pulmonology services providers (4) in our database.
See all Physical Therapy services providers (62) in our database.
See all Psychologist, Child-18 services providers (151) in our database.
See all SSI, Supplemental Security Income services providers (12) in our database.
See all Speech/Language Therapy services providers (80) in our database.
See all State Disability Agencies services providers (50) in our database.
See all Wish Foundations services providers (19) in our database.
For other services related to this condition, browse our Services categories or search our database.
|Author:||Lynne M Kerr, MD, PhD - 3/2012|
|Compiled and edited by:||URLEND Trainees, 2011-2012 - 3/2012|
|Content Last Updated:||9/2015|