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Category: Duchenne Resources

Duchenne Resources 5

Advocacy Groups Are Ready to Help _ Advocacy groups play an important role in helping you connect and bond with other people affected by Duchenne as well as giving a public voice. The following patient advocacy groups are here to help by offering information, guidance, and support. Advocacy groups in your community Advocacy groups such […]

Duchenne Resources 4

Audio Resources _ Below are a set of audio files recorded specifically for Spanish-speakers What is DMD? Early age DMD signs and symptoms – part 1 Early age DMD signs and symptoms – part 2 Seeking DMD diagnoses Peer navigator Sima Perez Genetic testing as diagnoses Genetic family testing Early diagnoses of DMD Disease progression […]

Duchenne Resources 3

Video Resources _ Max’s story Max Fernandez, a senior at Fordham University, has DMD. But his condition hasn’t stopped him from traveling the world and enjoying college life with the help of friends and family. In this video, Max shares his story, as well as challenges, common misconceptions about DMD, along with advice for kids […]

Duchenne Resources 2

Key DMD Scientific Publications _ A selection of key scientific papers and professional guidelines on the management of DMD. The ‘Navigating scientific publications’ resource to help you to familiarize yourself with the elements and terms that are commonly seen in different types of scientific publications. How to reduce the time to a DMD diagnosis Aartsma-Rus […]

Duchenne Resources 1

Duchenne’s Muscular Dystrophy (DMD) Resources _ There is a wealth of information available to people dealing with a DMD diagnosis. We have compiled a list of information for you on this page, including: Resources you can access directly, including various local support groups Videos with plenty of practical advice Free downloads of DMD materials Information […]

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Date of preparation: September 2022
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Terms and conditions

Important Terms and Concepts

Basic terms and key definitions

Neuromuscular disorders

Neuromuscular disorders affect the muscles and nerves, and most of the causes are genetic. This means they are either passed down through the family or caused by changes in an individual person’s genes.

Most neuromuscular disorders cause muscle weakness that worsens over time. Signs and symptoms of neuromuscular diseases can vary and may be mild, moderate, or severe.

Most often, when a child has a neuromuscular disease, they don’t grow and develop as fast as other children their age. They are often slow to start lifting their head, sitting, walking, and talking.

Treatment and supportive care may improve the symptoms of a neuromuscular disorder, increasing mobility and even life expectancy.

Muscular dystrophy

Muscular dystrophy is the term for a group of neuromuscular disorders that cause muscle weakness and muscle loss.

Duchenne muscular dystrophy (DMD) is a type of muscular dystrophy that causes muscle weakness that worsens over time. The progression and symptoms can vary from person to person.