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Living with Duchenne Muscular Dystrophy (DMD)

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Overview

A DMD diagnosis is devastating—but it doesn’t have to defeat you or your child.

People live productive, creative, and fulfilling lives with DMD.
 More and more young adults with DMD are attending university, pursuing rewarding careers and even having families of their own.

To help your child make the most of their future, start by finding out what adaptations can be made to enable them to participate in school as fully as possible. They deserve the same access to learning as any other child.

Then, connect with other people who are going through DMD. Talking to others about having DMD can be daunting, in this section we also provide you with some tips on deciding who to tell, where to start, how to explain what it is like to live with DMD, answering questions, and importantly, responding to people’s reactions.

Read more below—we hope it helps you build a better life with DMD.

What to expect from DMD

The symptoms of DMD are different for each child and the rate at which symptoms worsen varies. And, as time goes on, the symptoms of DMD will change:

  • As the muscles get weaker, the ability to walk is slowly lost
  • As the back muscles become weaker, the spine may begin to curve (called scoliosis)
  • In late childhood to early adulthood, the upper body and arm muscles also weaken
  • The heart and respiratory (or breathing) muscles also weaken over time, which can lead to complications


As DMD is a progressive disease, meaning the symptoms become more apparent over time, it is important to get your child the right treatments and management as soon as possible. This gives your child the best chance of maintaining their independence and quality of life for as long as possible.

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The information on this site is not intended to make a diagnosis or to take the place of talking to a US health care professional.

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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.