CARING FOR SOMEONE WITH DUCHENNE MUSCULAR DYSTROPHY

Duchenne is progressive, so individuals will require different kinds of care as they pass through different stages of the condition. Disease management strategies exist that can help maintain muscle function and slow the progression of the disease for as long as possible. This can help delay complications so individuals with Duchenne can live more independently and longer than ever before.

All over the world, scientists are researching new disease management strategies for Duchenne to help treat the disease. A specialist doctor can help determine which disease management strategies are appropriate for children and adults with Duchenne.

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WHAT CAN HELP TO TREAT DUCHENNE MUSCULAR DYSTROPHY?

Current care strategies focus on maintaining muscle function for as long as possible and managing the symptoms of Duchenne. These can be divided into two main categories:

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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.

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WHICH HEALTHCARE PROFESSIONALS ARE INVOLVED IN CARING FOR A CHILD WITH DUCHENNE MUSCULAR DYSTROPHY?

Although caring for a child with Duchenne requires that many healthcare professionals work together, a child’s primary doctor – often a paediatric neurologist – will usually coordinate the care.

Various healthcare professionals will be needed at different stages of the condition. They provide support to maximise quality of life and help maintain independence. When all those involved in a child’s care work together, the challenges associated with Duchenne can be easier to deal with.

Your Duchenne care team:
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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 specialist 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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HOW DOES DUCHENNE CHANGE OVER TIME?

Duchenne causes muscle weakness, which gets worse over time, resulting in increasing difficulty in performing everyday tasks and functions, such as walking, standing, and breathing. This leads to an increasing loss of independence.

Duchenne typically progresses slowly, but the rate of progression and severity of symptoms differ for every child.

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

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Phases of Duchenne

You may hear doctors and other sources of information refer to the different phases (or stages) of Duchenne, which describe how Duchenne progresses over time.

Typically, Duchenne progresses through the following four stages, although they may be referred to by different names.

1. Early phase

At the earliest point of this phase the signs and symptoms are generally unnoticed or unrecognised. Signs of Duchenne which may be noticed include speech delay or the inability to keep up with peers, or both. Gradually problems start to appear with walking, running or jumping.

2. Transitional phase

Walking starts to become difficult and physical signs of Duchenne, such as Gowers’ sign, waddling gait, and walking on toes, become noticeable. Fatigue is common. As the condition progresses use of a wheelchair may be necessary for long distances. The heart and breathing muscles should be monitored even if there are no noticeable problems at this stage.

3. Loss of ambulation

By this phase, most people with Duchenne are unable to walk and require a wheelchair on a regular basis. Scoliosis may begin to develop and it is important to talk to doctors about appropriate exercises. The heart and breathing muscles should be monitored regularly and any problems should be treated. Home adaptations will be needed as will support at school.

4. Adult phase

During this phase, a powered wheelchair is required at all times and hoists will be needed in the home. Upper limb function and good posture are increasingly difficult. Heart medication and breathing support may also be required. Transition to adult medical services will need to be arranged.

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

Thanks to advances in standards of care, many people with Duchenne are living into their 30s and beyond. More and more young adults with Duchenne are attending university and pursuing rewarding careers.

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