Facts about Muscular Dystrophy

Boy in wheelchair and mother

Muscular dystrophies are a group of diseases caused by defects in a person’s genes. Over time, this muscle weakness decreases mobility and makes the tasks of daily living difficult. There are many muscular dystrophies and the Centers for Disease Control and Prevention (CDC) studies the major types.

Different types of muscular dystrophy affect specific groups of muscles, have a specific age when signs and symptoms are first seen, vary in how severe they can be, and are caused by imperfections in different genes. Muscular dystrophy can run in the family, or a person might be the first one in their family to have the condition.

Muscular dystrophy is rare, and there is not a lot of data on how many people are affected by the condition. Much of the information comes from outside the United States. CDC scientists are working to estimate the number of people with each type of muscular dystrophy in the United States. The table below shows what is known about the major types of muscular dystrophy.

Types of Muscular Dystrophy

How common is this type?
In 2007, 349 out of 2.37 million males aged 5-24 years were reported to have DMD or BMD in the United States.1  This means that about 15 out of every 100,000 males ages 5-24 years were affected that year.

In 2009, 233 out of 1.49 million males were reported to have DMD or BMD in Northern England.2  That is, about 16 out of every 100,000 males were affected that year.

Are males or females more likely to be affected?
Males

When does muscle weakness typically begin?
DMD: Before 5 years 
BMD: Between 7-12 years

Which muscles usually show weakness first?
Upper arms, upper legs

What other parts of the body can be affected?
Brain, throat, heart, diaphragm/chest muscles, stomach, intestines, spine

 

References:

1. Emery AEH. The muscular dystrophies. The Lancet. 2002 Feb 23 2002;359(9307):687-695. 

2. Bushby KM, Goodship JA, Nicholson LV, Johnson MA, Haggerty ID, Gardner-Medwin D. Variability in clinical, genetic and protein abnormalities in manifesting carriers of Duchenne and Becker muscular dystrophy. Neuromuscul. Disord. Jan 1993;3(1):57-64.

3. Bushby KM, Appleton R, Anderson LV, Welch JL, Kelly P, Gardner-Medwin D. Deletion status and intellectual impairment in Duchenne muscular dystrophy. Dev. Med. Child Neurol. Mar 1995;37(3):260-269.

4. Centers for Disease C, Prevention. Prevalence of Duchenne/Becker muscular dystrophy among males aged 5-24 years – four states, 2007. MMWR Morb. Mortal. Wkly. Rep. Oct 16 2009;58(40):1119-1122.

5. Norwood FL, Harling C, Chinnery PF, Eagle M, Bushby K, Straub V. Prevalence of genetic muscle disease in Northern England: in-depth analysis of a muscle clinic population. Brain. Nov 2009;132(Pt 11):3175-3186.

 

Read about CDC’s Muscular Dystrophy Surveillance Tracking and Research Network, known as MD STARnet. Learn more about CDC’s other muscular dystrophy projects.

For more detailed information on each type of muscular dystrophy, see the summaries provided by Genetics Home Reference from the National Institutes of Health’s U.S. National Library of Medicine:

Duchenne/Becker Muscular Dystrophy

Myotonic Dystrophy

Facioscapulohumeral Muscular Dystrophy

Limb-Girdle Muscular Dystrophy

Congenital Muscular Dystrophy (Fukuyama type, Ullrich type, and others)

Distal Muscular Dystrophy (Laing, type 2, tibial type, and others)

Emery-Dreifuss Muscular Dystrophy

Oculopharyngeal Muscular Dystrophy

Early Intervention Services

Family sitting on the couch

Early intervention services help children learn important skills. These services can improve a child’s development. Even if the child has not been diagnosed with muscular dystrophy, he or she might be eligible for services. These services are provided through an early intervention system in each state. Through this system, you can ask for an evaluation. In addition, treatment such as physical therapy often does not need to wait for a formal diagnosis.

Learn more about early intervention »

Finding Support

Having support and community resources can help increase confidence in managing muscular dystrophy, enhance quality of life, and help meet the needs of all family members. It might be helpful for parents of children with muscular dystrophyto talk with one another. One parent might have learned how to address some of the same concerns another parent has. Often, parents of children with special needs can give advice about good resources for these children.

The choices of one family might not be best for another family, so it’s important that parents understand all options and discuss them with their child’s health care providers.

If you have a child with muscular dystrophy, you might:

Find families and events in your area through the Parent Project Muscular Dystrophy, an organization whose work focuses on Duchenne muscular dystrophy.

 

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