Phases of the disease

Ambulatory

The ambulatory phase is considered as the phase from diagnosis until not being able to walk independently anymore. In the case of Duchenne, some children are diagnosed before they are able to walk. During the diagnosis and early ambulatory stage, there are relatively few symptoms of Duchenne or Becker. Difficulties climbing stairs, running, and keeping up with peers can be seen. In the late ambulatory stage, people become tired with walking long distances and have difficulty keeping up with peers. This stage occurs in late childhood, adolescence and young adults (Becker). In Duchenne patients, this phase typically ends in their early teens.

Early loss of ambulation

Early loss of ambulation is considered as the phase when you cannot walk anymore, but you can still use your arms and are not using a ventilator or probably just at night. People affected might need a wheelchair or scooter to move around. With Duchenne patients, this stage often starts earlier (in their childhood) than those affected with Becker (adolescence, young adults).

Late loss of ambulation

Late loss of ambulation is considered the phase when Duchenne or Becker people in general, need ventilation and have very limited arm and hand function. Everybody is different but often young adults with DMD are in this phase. During the final late non-ambulatory stage, people affected are having trouble using their hands and maintaining good posture. In all phases learning and behavioural problems may play a role as well.

Care information per phase

In order to find the information which is appropriate per phase of the disease your child or yourself are in, the World Duchenne Organization published a series of Care Videos, to make Duchenne care information accessible for as many people as possible and more specific for children as well. Each video provides a clear explanation of a different aspect of DMD care. For more info about the videos in the different ages/phases and about how to create the videos in your own language, please visit our special DMD Care website.

The content of the video’s is in line with the updated International Care Considerations as published in the Lancet (Neurology) early 2018 and the update DMD Family Guide produced by World Duchenne Organization, TREAT-NMD, PPMD and MDAUSA.

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