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 care for mental health. 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.
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.
The DMD Care Videos are a series of short animated videos that aim to provide easy-to-understand information on caring for people with Duchenne Muscular Dystrophy (DMD. The videos are based on the 2018 Care Considerations published in Lancet Neurology and are designed to be accessible for both parents and children living with DMD.
The videos cover topics such as physiotherapy, medication management, and lifestyle adjustments, all presented in a clear and engaging way. By involving children with DMD in learning about their own care, the DMD Care Videos can empower them to take an active role in managing their health.
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