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Caring for someone with Duchenne

on a daily basis

The most important thing for caring for someone with Duchenne is to give them the right type of care regarding age and ambulatory status. There are various perspectives on how to care for someone affected by Duchenne muscular dystrophy. The most important thing is to support and provide them with the right type of care, regarding their age, and whether they are in a wheelchair or not.

Next to physical care (making sure their bones are healthy, you have regular hospital check-ups, and do daily stretches), you also have to think of emotional care. A social worker, psychologist or psychotherapist can assist you with this.

The updated Family Guide is an excellent resource in multiple languages to see what is the best care you can find. The Consensus Guideline For Adult Duchenne Care provides a framework to improve clinical services and multi-disciplinary care for adults living with Duchenne Muscular Dystrophy.

In terms of support

A full explanation about DMD care is described in the Family Guide. Next to this, there are the DMD Care Videos. These are a series of short animations explaining what is important. To find information on Duchenne care, see the links below.

Providing Duchenne Care

DMD Care Videos

Translating standards of care

With good care, life’s prospects, expectations and quality can improve greatly for people living with Duchenne worldwide. It is important that people themselves as well as their families are aware of all they can do to improve their health and their future, for most Duchenne care takes place at home.

Scroll down to see the translations and subtitled versions.

In line with the Duchenne Guide for Families, WDO published a series of educational videos. They are called explanimations and are created 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.

See care videos divided in 3 groups