What is Duchenne Muscular Dystrophy?

Duchenne Muscular Dystrophy (DMD) is a rare genetic disorder characterized by progressive muscle degeneration and weakness due to the alterations of a protein called dystrophin that helps keep muscle cells intact.  Duchenne causes the muscles in the body to become weak and damaged over time. DMD symptom onset is in early childhood, usually between ages 2 and 3. The disease primarily affects males, but in rare cases it can affect females.

What are the symptoms of DMD?

Muscle weakness is the principal symptom of DMD. It can begin as early as age 2 or 3, first affecting the proximal muscles (those close to the core of the body) and later affecting the distal limb muscles (those close to the extremities). Usually, the lower extremity muscles are affected before the upper extremity muscles. The affected child might have difficulty jumping, running, and walking. Other symptoms may include delayed walking abilities (18 months or later), walking on toes with legs apart, belly out, or both, falling down often, needing help getting up from the floor by using arms to “walk” the body up the legs, fatigue, enlargement of the calves, a waddling gait, and lumbar lordosis (an inward curve of the spine). Later on, the heart and respiratory muscles are affected as well. Progressive weakness and scoliosis result in impaired pulmonary function.

How can a Physical Therapist Help my child with DMD?

Physical therapists help children with DMD maintain function by managing complications of the disorder’s progression, such as muscle weakness and contractures. Physical therapy should begin as soon as possible after diagnosis and before joint or muscle tightness has developed. Physical therapists identify muscle weakness, and work with each child to keep muscles as flexible and strong as possible, help reduce or prevent contractures and deformities, and encourage movement and mobility for optimal function throughout all the stages of life. Each treatment plan is designed to meet the child’s needs using a family-centered approach to care. If assistive devices are needed, the physical therapist may collaborate with other professionals to determine the best walking aids, braces, or wheelchair for each child. Physical therapists work with children who have muscular dystrophy to prevent or reduce joint contractures, maintain or improve cardiorespiratory and muscle strength, adapt activities or the child’s home or school environments to promote movement and mobility skills, and increase daily activities, which encourage participation in the community. If your child has been diagnosed with muscular dystrophy, treatment may include:

Passive and active stretching. Your physical therapist will perform gentle “passive” stretches for your child, gently moving their legs and arms, and teach you and your child how to perform active stretches in order to increase joint flexibility (range of motion) and prevent or delay the development of contractures.

Exercises to maintain strength. Your physical therapist will teach you and your child exercises to maintain muscle and trunk strength and to use good posture and body mechanics throughout the life span. Activities such as bike riding and swimming are great to consider; your physical therapist will help you make sure these activities are not too strenuous or fatiguing. Over-exercising can damage muscles. Parents are encouraged to seek physical therapist services early in order to identify the best strengthening activities for their child.

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