Duchenne is a disease that weakens the body's muscles over time. Once muscle tissue is weak or gone, it cannot be "fixed," which is why Duchenne is considered irreversible.
The early phase usually lasts until around age 7, which is a key turning point in normal growth and development. During this phase, parents may notice their child having trouble with certain activities like sitting, walking, or talking. Children with Duchenne may be more tired than other children. Since ages 1-7 are a time of rapid growth for all children, and a child with Duchenne will continue to grow during this time, the onset of these symptoms can be difficult to recognize. If you notice any of these issues in your child, it is important to get him evaluated and tested to determine a diagnosis as soon as possible.
During the transitional phase, a child with Duchenne will experience increasing weakness in his muscles. He may also have trouble moving as easily as a healthy child. The large muscles in the front of the thigh – called the quadriceps – are responsible for many everyday movements like walking, going up stairs, and getting up from a sitting position. As these muscles weaken, you might notice your child having difficulty walking. He may walk on his toes or have a wobbly or abnormal gait, and he may start to use what's called the Gower's Maneuver to get up from the floor. He may also begin to have heart problems during this stage.
In this phase, children with Duchenne experience the largest impact on their independence, as they become more and more dependent on a wheelchair. Over time, use of their arms and legs requires assistance, and they may need to rely on a power wheelchair all the time. Most children with Duchenne retain use of their hands and fingers, so they can continue to write or use a computer. Because their trunk muscles are weakening as well, scoliosis (curving of the spine) may develop, and the heart and breathing ability will be closely monitored.
In the last phase of Duchenne, there is usually increased difficulty in breathing. Life-threatening heart and lung conditions are more likely. Regular heart and lung monitoring is required, medications are often necessary, and breathing support may be needed. Historically, boys with Duchenne typically die in their late 20s to early 30s due to complications with their heart and lungs.