GETTING THE RIGHT CARE

If your child or loved one has Duchenne, it is vital that you have access to the right information and advice.

Talking to your doctor about the services and support available is one of the most important steps you can take. That is because early management and care will give your family the best chance at living well with Duchenne.

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HOW IS DUCHENNE TREATED?

The right management gives your loved one the best chance at living the best life possible.

3 ways appropriate management can help:

First step in Duchenne treatment

May stop the disease progressing so rapidly

Second step in Duchenne treatment

May help control symptoms

Third step in Duchenne treatment

May help your child or loved one lead a longer and healthier life

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There are two main categories of treatment available for Duchenne:

pill

MEDICATIONS
Drugs that help slow the loss of muscle function and treat the symptoms of Duchenne.

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stethoscope

SUPPORTIVE CARE
Manages the complications of Duchenne and helps improve a person’s quality of life. This includes things like physiotherapy, heart monitoring and breathing support.

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Find out what care you need
There are different stages of Duchenne, and each stage requires a different type of treatment. Ask your doctor about the best care options for your child or loved one.
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HOW DOES DUCHENNE CHANGE OVER TIME?

Duchenne causes muscle weakness that gets worse over time.

This means that walking, standing and everyday tasks become increasingly difficult. Eventually, the muscles that control the heart and lungs stop working, although this typically takes many years.

While the progression and severity of symptoms of Duchenne differ for every child, most will experience some of the stages shown below.

over time over time

Figure references: Birnkrant 2018 Part 3; Bushby 2010; Goemans 2014; Sussman 2002; Van Ruiten 2014

did you know
People with Duchenne are living longer than ever before

If your child or loved one has Duchenne, it is not unreasonable to expect to live into their 30s and beyond. There is no reason why Duchenne should stop them earning a higher education degree, getting married or having a career.

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HOW YOUR CARE TEAM WILL HELP YOU

Receiving a diagnosis of Duchenne can be a difficult time, but you are not alone. Your care team are there for you and will be able to offer information and support as you need it, so please reach out to them.

Your Duchenne care team may include:
  • Orthopaedic physician
  • Cardiologist
  • Respiratory physician
  • Clinical nurse specialist
  • Regional care advisor
  • Social worker/psychologist/psychiatrist
  • Genetic counsellor
  • Dietician
  • Paediatric neurologist
  • Physical therapist
  • Occupational therapist

Figure references: Birnkrant 2018 Part 1; Birnkrant 2018 Part 2; Birnkrant 2018 Part 3; Muscular Dystrophy UK

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Get support
Ask your doctor to put you in touch with your care team. This is the group of specialists who work together to provide the best and most appropriate care for the individual with Duchenne.
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