In an accident or emergency, call 999. People with Duchenne muscular dystrophy (DMD) need expert medical treatment. It’s dangerous to treat them yourself or rely on information online.
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 (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.
We advise you to update the app regularly and print a copy of the PDF from the app to share with your child’s school and other caregivers, so that they can share this with medical professionals in the event of an emergency.
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.
As well as downloading the In Case of Emergencies app, you can 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.
We have a series of resources available to help you when a loved one is diagnosed with DMD.Diagnosis resources
As children with DMD grow older, their needs change. We provide guidance for families with teenagers.Resources for adolescence
Many in the DMD community are concerned about COVID-19. Find the latest guidance from experts.Resources for the pandemic