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Telling Others About DMD: How To Make It Easier


Telling your friends and family about DMD can be daunting, but it is a vital part of the coping process. Once people close to you know, they can serve as strong pillars of support.

While there is no right or wrong way to break the news, taking these five steps may help make it a little easier:

Decide who to tell

While it is entirely up to you who you tell – or do not tell – it is usually a good idea to be open with your loved ones about DMD.

Start with the basics

Both adults and children deal with a situation better if they feel they understand it. A good rule of thumb is to start by telling people what you feel they will be able to comprehend.

  • When talking to adults, go into as much detail as you feel is appropriate. You might want to have some information on hand – this can help you if you get stuck for what to say
  • When talking to children, it is best to provide simple, age-appropriate explanations to help them grasp what is happening

Download our age-appropriate books to help children learn about DMD. It is important to:
– Stress that DMD is nobody’s fault
– Reassure your loved ones that nothing anyone did or did not do could have caused DMD
– Explain that DMD is a disease that people are born with

Explain what it is like to live with DMD

Explain how DMD affects your child’s everyday life. Review things like physical challenges, emotional reactions and medical treatments.

Answer questions openly and honestly

Try to create an environment where people feel safe asking questions and sharing feelings. This is particularly important for children, as questions enable you to correct misunderstandings and help them express feelings.

Let people deal with the news in their own way

You will probably find that different people react to the DMD diagnosis in different ways. Some may want lots of information while others will not want to hear about the ‘medical’ side of DMD. Some may find it difficult to discuss feelings while others may not be able to stop. Some may want to surround themselves with people while others may wish to be alone.

Communicate what feels right for you and/or your loved one and listen to what others tell you works for them.


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Date of preparation: September 2022

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.