GETTING THE RIGHT CARE

If you or your 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?

Starting treatment gives your loved one the best chance at living the best life possible.

3 ways treatment can help:

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Stops the disease progressing so rapidly

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Helps control symptoms

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Helps you or your loved one lead a longer and healthier life

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There are two main categories of treatment available for Duchenne:

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MEDICATIONS

Drugs that help slow down muscle damage and treat the symptoms of Duchenne.

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SUPPORTIVE CARE
Treats 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.

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Figure adapted from Birnkrant 2018 Part 3; Bushby 2010; Goemans 2014; Sussman 2002

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