Muscular Dystrophy Factsheet (for Schools)

What Teachers Should Know

Muscular dystrophy is a group of genetic (inherited) disorders that cause muscles to weaken over time. It's caused by incorrect genetic information that prevents the body from making the proteins needed to build and maintain healthy muscles.

Over time, people with muscular dystrophy lose the ability to do things like walk, sit upright, breathe easily, and move their arms and hands.

There is no cure for muscular dystrophy. But doctors are working to improve muscle and joint function and slow muscle deterioration so people can live as actively and independently for as long as possible.

There are different types of muscular dystrophy. Most start in childhood, but some don’t appear until early adulthood. Common types are:

• Duchenne MD is the most common and most severe form of muscular dystrophy. Boys with Duchenne usually begin to have problems around age 5 (girls can carry the gene that causes Duchenne, but usually have only mild symptoms). Most boys with this form will need to use a wheelchair by age 12. The respiratory (breathing) muscles and heart muscle may weaken in the teen years. Some boys with Duchenne also have learning disabilities.
• Becker MD is similar to Duchenne but progresses more slowly. Symptoms usually begin during the teen years.
• Myotonic dystrophy is the most common adult form of muscular dystrophy. Myotonic dystrophy that starts in childhood is often associated with learning and behavior problems.
• Limb-girdle MD affects boys and girls equally. Symptoms can start at any age. It gets worse slowly and affects the pelvic, shoulder, and back muscles. Some kids have only mild weakness, while others will eventually need to use a wheelchair.
• Facioscapulohumeral MD also affects boys and girls. Symptoms usually first appear during the teen years and progress slowly. Muscle weakness starts in the face, upper arms, and shoulders.

Students with MD may:

• need an individualized education plan (IEP) or 504 education plan
  
• need adaptive or assistive technological devices in the classroom (such as a keyboard for writing)
• wear braces, use crutches or walker, or need a wheelchair
• need extra time to get to classes or use of an elevator
• miss class time due to physical therapy sessions and medical appointments
• need tutoring or support  
• need extra time to make up assignments and take tests
• have preferential seating
• be at risk for bullying

What Teachers Can Do

Symptoms and classroom accommodations will vary among students with muscular dystrophy. Talk to parents and caregivers to better understand your student’s needs.

Make sure your classroom is easy to get around and free of obstacles. Encourage classmates to be supportive and help when needed. Encourage your students with muscular dystrophy to participate in all classroom activities at their own pace and comfort level. Physical activity should be adapted to the student’s ability.