What to do in an emergency

In an accident or emergency, call 999. People with Duchenne muscular dystrophy (DMD) need expert medical treatment. 

Tell medical staff that your child has DMD and show them the Duchenne A&E pack website, which has important information on using anaesthesia and opiates, steroid treatment, fractures, heart problems, gastrointestinal problems, and breathing problems.


The Duchenne UK In Case of Emergency app

The Duchenne UK In Case of Emergency (ICE) app aims to help save lives by preventing mistreatment of DMD patients in an emergency. It allows you to keep a profile of your/your child’s medical needs and emergency contacts, as well as general guidance on treating DMD patients. This can be quickly sent to medical staff as a PDF document. 

Notice about the app

We are aware that there are some problems with our emergency care app at the moment and are working hard to fix this.

It’s really important that you have reliable access to vital information in an emergency situation, and we advise you to use our online Emergency Pack or show it to medical professionals treating you or the person you care for, until the problems are fixed. You can request one by emailing us at [email protected].

Thank you so much for your patience and many apologies for this pause in the app.

How to prepare for emergencies

Prepare a documented emergency plan with your GP or neuromuscular consultant. This should cover information about medication your child is taking, any medical issues specific to your child and the contact details for their doctor.

Order a steroid dependent wristband to alert doctors that your child is dependent on steroids. DMD medical alert cards are also available from MDUK. Carry these with you/your child at all times.

Watch DMD Care UK’s webinar for more guidance on coping with illness and falls at home, managing steroids and what to say to medical staff in emergencies. 

What to do when a child with DMD:

Our resources hub

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Treatments and therapies for DMD

Find out about the current treatments available and care recommendations in the UK.

Current treatments Current treatments
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Help at diagnosis

We have a series of resources available to help you when a loved one is diagnosed with DMD.

Diagnosis resources Diagnosis resources
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Help with your teenager

As children with DMD grow older, their needs change. We provide guidance for families with teenagers.

Resources for adolescence Resources for adolescence