Muscular Dystrophy Factsheet (for Schools)

What Teachers Should Know

Muscular dystrophy (MD) is a genetic (inherited) disorder that causes the muscles in the body to gradually weaken and eventually stop working. It's caused by incorrect or missing genetic information that prevents the body from correctly making the proteins needed to build and maintain healthy muscles.

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

There is no cure for MD, but doctors are working on improving muscle and joint function and slowing muscle deterioration so people with MD can live as actively and independently as possible.

There are different types of MD; some start in infancy, others may not appear until early adulthood. Common types are:

• Duchenne MD, which is the most common and most severe form. Boys with Duchenne MD usually begin to have problems around age 5 (girls can carry the gene that causes Duchenne, but usually don't have symptoms). Most boys with this form need to use a wheelchair by age 12. The respiratory (breathing) muscles and heart muscle also may weaken in the teen years, requiring further treatment. Some boys with Duchenne also have learning disabilities.
• Becker MD, which is similar to Duchenne, but less common and progresses more slowly. Symptoms usually begin during the teen years. Many children with Becker MD can lead long, active lives without wheelchairs.
• Myotonic dystrophy, also known as Steinert's disease. This is the most common adult form of MD, although half of all cases are diagnosed in people younger than 20.
• Limb-girdle MD, which affects boys and girls equally. Symptoms usually start between the ages of 8 and 15 years. This form progresses slowly and affects the pelvic, shoulder, and back muscles. Some kids have only mild weakness, while others develop severe disabilities and need to use a wheelchair as adults.
• Facioscapulohumeral MD, which also affects both boys and girls. Symptoms usually first appear during the teen years and progress slowly. Muscle weakness first develops in the face.

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)
  
• use a wheelchair or wear joint braces
  
• use a ventilator for breathing
  
• need additional time to take tests and quizzes
  
• require additional time to get to other classes or use of an elevator
  
• need special considerations about latenesses, absences, shortened school days, and missed class work and homework due to physical therapy sessions
  
• require tutoring or additional time to make up assignments
  
• need frequent bathroom breaks or visits to the school nurse for medications
  
• be at risk of bullying

What Teachers Can Do

Symptoms can vary among students with MD, as can the severity of related problems. Teachers and classmates can be supportive by being aware of any changes in symptoms and watching for signs of abnormal fatigue throughout the day.

Encourage your students with MD to participate in all classroom activities at their own pace and comfort level.

Teachers should have realistic expectations for parents of kids and teens with MD. Exhausting care routines and health care appointments can take up big chunks of time and energy.