Duchenne and Becker Muscular Dystrophy
- Introduction
- 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?
- Resources
Introduction
What is Duchenne muscular dystrophy and what causes it?
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.
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?
Resources
Information & Support
For Parents and Patients
Duchenne and Becker Muscular Dystrophy (MedlinePlus)
Information for families that includes description, frequency, causes, inheritance, other names, and additional resources;
from the National Library of Medicine.
Duchenne Muscular Dystrophy (MedlinePlus)
Information for families that includes description, frequency, causes, inheritance, other names, and additional resources;
from the National Library of Medicine.
Muscular Dystrophy (MedlinePlus)
Information for families that includes description, frequency, causes, inheritance, other names, and additional resources;
from the 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)
Information about muscular dystrophy, treatment, prognosis, research, and links to other organizations; National Institute
of Neurological Disorders and Stroke.
Learning about DMD (National Human Genome Research Institute)
Information for families with a focus on genetics.
Genetics in Primary Care Institute (AAP)
Contains health supervision guidelines and other useful resources for the care of children with genetic disorders; American
Academy of Pediatrics.
Consumer Guide to Hospice (WashingtonPost)
A consumer guide to hospices that participate in Medicare, searchable by state and county.
Patient Education
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.
Services for Patients & Families in New Mexico (NM)
Service Categories | # of providers* in: | NM | NW | Other states (5) (show) | | ID | MT | NV | RI | UT |
---|---|---|---|---|---|---|---|---|---|---|
Assistive Technology Equipment | 510 | 35 | 60 | 43 | 40 | 40 | 61 | |||
Bone Densitometry/DEXA | 2 | |||||||||
Developmental - Behavioral Pediatrics | 2 | 1 | 2 | 8 | 3 | 11 | 8 | |||
Disability Awareness Programs | 197 | 51 | 77 | 56 | 84 | 55 | 104 | |||
Disability Related Employment Programs | 166 | 3 | 45 | 8 | 19 | 16 | 85 | |||
Early Intervention for Children with Disabilities/Delays | 156 | 2 | 148 | 28 | 30 | 13 | 56 | |||
General Counseling Services | 96 | 1 | 201 | 146 | 174 | 33 | 413 | |||
General Dentistry | 13 | 1 | 105 | 258 | 30 | 18 | 140 | |||
Hospice & Palliative Care | 64 | 3 | 20 | 6 | 25 | 4 | 51 | |||
Hospitals | 102 | 1 | 50 | 23 | 42 | 4 | 61 | |||
Neuromuscular Clinics | 2 | 1 | 1 | 4 | 2 | 2 | 5 | |||
Neuropsychiatry/Neuropsychology | 3 | 3 | 7 | 6 | 11 | |||||
Nutrition Assessment Services | 83 | 1 | 1 | 14 | 3 | 8 | ||||
Occupational Therapy | 297 | 27 | 40 | 21 | 10 | 40 | ||||
Pediatric Cardiology | 31 | 1 | 3 | 17 | 5 | 17 | 6 | |||
Pediatric Dentistry | 70 | 2 | 60 | 52 | 32 | 30 | 63 | |||
Pediatric Endocrinology | 29 | 1 | 2 | 15 | 6 | 13 | 4 | |||
Pediatric Genetics | 4 | 1 | 3 | 7 | 5 | 4 | 7 | |||
Pediatric Neurology | 31 | 1 | 16 | 6 | 15 | 6 | ||||
Pediatric Ophthalmology | 9 | 1 | 9 | 14 | 6 | 8 | 6 | |||
Pediatric Orthopedics | 13 | 2 | 4 | 14 | 6 | 12 | 19 | |||
Pediatric Physical Medicine & Rehabilitation | 4 | 1 | 1 | 4 | 1 | 3 | 13 | |||
Pediatric Pulmonology | 7 | 2 | 6 | 4 | 9 | 4 | ||||
Physical Therapy | 320 | 34 | 45 | 22 | 3 | 48 | ||||
SSI/SSDI | 30 | 4 | 35 | 5 | 12 | 9 | 14 | |||
Social Workers | 35 | 10 | 7 | 11 | ||||||
Speech - Language Pathologists | 376 | 3 | 67 | 52 | 22 | 23 | 74 | |||
Student Disability Services | 128 | 1 | 1 | 6 | 2 | 11 | 8 | |||
Supportive Housing & Residential Care Homes | 107 | 31 | 4 | 5 | 6 | 43 | ||||
Wish Foundations | 18 | 17 | 19 | 20 | 19 | 20 | 23 |
For services not listed above, browse our Services categories or search our database.
* number of provider listings may vary by how states categorize services, whether providers are listed by organization or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited to web-based services, provider locator services, and organizations that serve children from across the nation.
Studies
Clinical Trials in DMD (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.
Research in DMD (Parent Project Muscular Dystrophy)
Listing and explanation of clinical trials for DMD.