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What Does Duchenne Care Look Like?

The care of a person living with Duchenne must be comprehensive, caring for many parts of the body. PPMD has created care pages that present care in two ways:

Because care is complex, a one-page document of care was created by several international organizations. It is called the “Imperatives for DUCHENNE MD” (download). This document is meant for healthcare providers who may have little knowledge of Duchenne and for parents and families that want to be sure that all aspects of care are being addressed.

To learn more about the symptoms of, and care for, Duchenne, you can navigate to the Early Stage (Diagnosis to about age 7) section of our site.

Learn more about care at this stage

Assembling a Care Team

It is extremely important that you work with a comprehensive, multidisciplinary neuromuscular team that has experience and expertise managing all aspects of patients and families living with Duchenne. This comprehensive team will allow each specialist to give input into the best and most appropriate care for you and your child.

Learn more about assembling a care team

Certified Duchenne Care Centers

PPMD is dedicated to ensuring that all families have access to comprehensive, optimal Duchenne care. For this reason, we have started the Certified Duchenne Care Center Program, creating a network of sites capable of providing the highest level of comprehensive Duchenne care. Find out if there is a site near you and learn more about what goes into our certification process.

Find a certified care center near you

Physical Therapy & Stretching

As muscles are used for normal day-to-day activity, tiny tears are created in the muscle. Because there is no dystrophin, the muscles can’t repair themselves by making new muscle, so the damaged muscle is replaced by fat and scar tissue, which is not as “stretchy” as muscle. One of the first places that this happens is the Achilles tendon, the tendon that runs from the back to the knee to the heel of the foot. As the Achilles tendon tightens, it may cause patients to walk on their toes. As you can see, tightening of muscles can cause difficulties in walking and many other activities.

To counteract this tightening, it is very important that you learn how to stretch your child’s muscles. It is also very important that you begin to work with a physical therapist that is familiar with Duchenne. Visit our Physical Therapy page for videos that describe and demonstrate how to do stretches at home, and for more information and resources. If you would like a hard copy of any of these materials, please contact us and we will send them to you. If your physical therapist is not familiar with your child’s diagnosis, we can also provide them with resources and contacts that will help in the care of your child.

Learn about Physical Therapy & Stretching

Discussing Steroids

A type of steroid called “corticosteroids” are used to slow down muscle damage and weakness in Duchenne. The risks and benefits of starting steroids should be discussed near the time of diagnosis with your neuromuscular specialist. Most children start before age 5 years old.

Learn about Steroids