WELCOME TO DUCHENNE AND YOU

Duchenne and You is a resource dedicated to those who have had their lives touched by Duchenne muscular dystrophy.

Whether your child or loved one has been diagnosed with Duchenne, or you are worried that they might be showing symptoms, you have come to the right place

As a source of knowledge, hope and ongoing support, we will help you find out what to expect and what to do next.

From day one, our aim is to guide you through the Duchenne healthcare journey so you or your loved one can focus on living the best life possible.

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WHAT IS DUCHENNE MUSCULAR DYSTROPHY (DMD)?

Duchenne is a rare condition, affecting around 1 in 3,600‒6,000 boys.

Click greyplus in the list below to find out more.

  • Duchenne is a type of muscular dystrophy
  • Duchenne affects muscles in the body
  • Duchenne is caused by a lack of dystrophin
  • Duchenne largely affects boys, but girls can also have symptoms
  • People with Duchenne are living for longer
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WHAT ARE THE SIGNS AND SYMPTOMS OF DUCHENNE?

The first noticeable signs of Duchenne are that a child does not reach developmental milestones when expected. These milestones include lifting their head, sitting, walking, and talking.

Children with Duchenne may also have learning and behaviour problems, including poor attention and memory skills.

Most of the time, a delay in development is nothing to worry about. Every child develops differently, and there is a wide range of what is considered to be ‘normal’.

However, in rarer situations, it could be the first sign of Duchenne.

One of the most important things you can do as a parent or caregiver is become aware of what skills are expected at what ages, and what your child or loved one is accomplishing.

To help you keep track of this, we have created a developmental milestone checklist. This has been designed to help you identify warning signs for developmental delays in children from birth to 3 years old.

Developmental milestone checklist
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WHAT TO DO IF YOU ARE CONCERNED

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Remember that every child develops differently, so slight developmental delays do not automatically mean something is wrong.

However, if you suspect that your child or loved one has a developmental delay, it is important to speak to your family doctor as soon as possible.

You should also tell your family doctor if you think your child or loved one:

  • Is falling behind other children their age
  • Walks strangely
  • Gets tired or exhausted easily
Take
action
Do not wait.
If you suspect a developmental delay, ask your family doctor for an evaluation.
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WHY IS EARLY DIAGNOSIS IMPORTANT?

If your child or loved one has Duchenne, it is better to find out sooner rather than later.

The earlier the diagnosis, the sooner your child or loved one can start to receive medical care. And the sooner this starts, the more potential there is for slowing down the disease, and helping to preserve muscle function for as long as possible.

There are other benefits to finding out as early as possible:

  • You will have access to specialist clinics and doctors
  • Other family members can be tested for Duchenne
  • You can find out the risk of Duchenne in any future pregnancies
  • You can start planning how to take care of your child or loved one at home
  • You may be able to enroll your child or loved one in clinical trials of new treatments
  • You can get support from local patient organizations and talk with other affected families to see that you are not alone