Reviewed 05-29-2001 Get Web page suited for printing
Email this to a friend or colleague
Studies with patientsTable of Contents (click to jump to sections)
What is Muscular Dystrophy (MD)?
Is there any treatment?
What is the prognosis?
What research is being done?
Organizations
Related NINDS Publications and Information
Additional resources from MEDLINEplus
What is Muscular Dystrophy (MD)?
Muscular dystrophy (MD) refers to a group of genetic diseases characterized by progressive weakness and degeneration of the skeletal or voluntary muscles which control movement. The muscles of the heart and some other involuntary muscles are also affected in some forms of MD, and a few forms involve other organs as well. The major forms of MD include myotonic, Duchenne, Becker, limb-girdle, facioscapulohumeral, congenital, oculopharyngeal, distal and Emery-Dreifuss. Duchenne is the most common form of MD affecting children, and myotonic MD is the most common form affecting adults. MD can affect people of all ages. Although some forms first become apparent in infancy or childhood, others may not appear until middle age or later.Is there any treatment?
There is no specific treatment for any of the forms of MD. Physical therapy to prevent contractures (a condition in which shortened muscles around joints cause abnormal and sometimes painful positioning of the joints), orthoses (orthopedic appliances used for support) and corrective orthopedic surgery may be needed to improve the quality of life in some cases. The cardiac problems that occur with Emery-Dreifuss MD and myotonic MD may require a pacemaker. The myotonia (delayed relaxation of a muscle after a strong contraction) occurring in myotonic MD may be treated with medications such as phenytoin or quinine.
What is the prognosis?
The prognosis of MD varies according to the type of MD and the progression of the disorder. Some cases may be mild and very slowly progressive, with normal lifespan, while other cases may have more marked progression of muscle weakness, functional disability and loss of ambulation. Life expectancy may depend on the degree of progression and late respiratory deficit. In Duchenne MD, death usually occurs in the late teens to early 20s.
What research is being done?
The NINDS supports a broad program of research on MD. The goals of these studies are to increase understanding of MD and its cause(s), develop better therapies, and, ultimately, find ways to prevent and cure the disorder.
Select this link to view a list of studies currently seeking patients.
OrganizationsFacioscapulohumeral Dystrophy (FSHD) Society
3 Westwood Road
Lexington, MA
02420
info@fshsociety.org
http://www.fshsociety.org
Tel: 781-860-0501
Fax: 781-860-0599
Muscular Dystrophy Association
3300 East Sunrise Drive
Tucson, AZ
85718-3208
mda@mdausa.org
http://www.mdausa.org/
Tel: 520-529-2000
800-572-1717
Fax: 520-529-5300
Muscular Dystrophy Family Foundation
2330 North Meridian Street
Indianapolis, IN
46208
mdff@mdff.org
http://www.mdff.org
Tel: 317-923-6333
800-544-1213
Fax: 317-923-6334
Parent Project Muscular Dystrophy (PPMD)
1012 North University Blvd.
Middletown, OH
45042
info@parentprojectmd.org
http://www.parentprojectmd.org
Tel: 513-424-0696
800-714-KIDS (5437)
Fax: 513-425-9907
International Myotonic Dystrophy Organization
P.O. Box 1121
Sunland, CA
91041-1121
myotonicdystrophy@yahoo.com
http://www.myotonicdystrophy.org
Tel: 818-951-2311
866-679-7954
Related NINDS Publications and InformationWorkshop on Theraputic Approaches for Duchenne Muscular Dystrophy
Summary of a May 2000 NINDS workshop on Duchenne muscular dystrophy.
Conference on the Cause and Treatment of Facioscapulohumeral Muscular Dystrophy
Summary of a conference, "The Cause and Treatment of Facioscapulohumeral Muscular Dystrophy," held May 8-9, 2000.
Congressional Testimony on Muscular Dystrophy, February 27, 2001.
Congressional testimony on muscular dystrophy by Dr. Audrey Penn, Acting Director, NINDS, February 2001.
NINDS health-related material is provided for information purposes only and does not necessarily represent endorsement by or an official position of the National Institute of Neurological Disorders and Stroke or any other Federal agency. Advice on the treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient's medical history.
All NINDS-prepared information is in the public domain and may be freely copied. Credit to the NINDS or the NIH is appreciated.
Provided by:
The National Institute of Neurological Disorders and Stroke
National Institutes of Health
Bethesda, MD 20892
Return to top