Red Lake Nation News - Babaamaajimowinan (Telling of news in different places)

THE DIAGNOSIS AND MANAGEMENT OF DUCHENNE MUSCULAR DYSTROPHY

A GUIDE FOR FAMILIES

 

September 10, 2018



Duchenne muscular dystrophy (DMD or Duchenne) is a difficult, complex diagnosis to

understand and manage. This is not a world that anyone enters willingly. The Muscular

Dystrophy Association (MDA), Parent Project Muscular Dystrophy (PPMD), TREAT -NMD and the World Duchenne Organization (UPPMD) all understand the heartache and angst that parents feel with this diagnosis, and the support that is needed thereafter. As you journey through this diagnosis, it is important to all of us that you or your child receive the very best in care, support, and resources. For this reason, we have worked together to develop this 2018 Duchenne Family Guide.

Duchenne is one of a spectrum of muscle diseases known as “dystrophinopathies.”

Dystrophinopathies result from the absence of the muscle protein “dystrophin” and range from the more severe phenotype (symptoms that you see) Duchenne muscular dystrophy to the milder yet variable phenotype of Becker muscular dystrophy. For simplicity, we primarily refer to Duchenne throughout this Family Guide.

https://www.mda.org/sites/default/files/MDA-DMD-family-guide_18-0410.pdf

 

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