fbpx

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 our In Case of Emergency app that we have launched to help prevent people with DMD being given the wrong treatment in emergencies.

We created it because too many people with DMD are not getting the appropriate treatment in Accident and Emergency (A&E) departments.

This is very serious as not receiving the right treatment in a medical emergency can be fatal for people with DMD.

The Duchenne UK In Case of Emergency app

Too often parents and carers of children with DMD and adults with DMD have to argue for the appropriate treatment in A&E.

The In Case of Emergency app is designed to help you explain what treatment is needed when you are in an emergency.

How the In Case of Emergency app can help in emergency situations

The app will allow you to:

  • Keep a profile of your/your child’s medical needs
  • Add your emergency contacts
  • Share general guidance on treating DMD patients with healthcare professionals
  • Be supported by four critical recommendations, called ‘Shiv’s recommendations’

‘Shiv’s recommendations’ is a tribute to a beautiful boy named Shiv, who died at the age of 12. His family, driven by love and the desire to help others, created this special section to honour Shiv’s memory and ensure that other families facing DMD feel empowered and supported.

In this section, you’ll find a four-point checklist, thoughtfully provided by Shiv’s parents. It is meant to guide families in navigating the complexities of DMD, especially during emergencies in A&E. This advice is more than just practical, it’s a heartfelt way to share the lessons learned from Shiv’s journey, so other boys with DMD receive the best care possible, and their families feel confident advocating for their needs.

Shiv’s legacy lives on through these recommendations, offering a compassionate hand to parents during difficult moments, helping them find strength and guidance when they need it most.

Download the In Case of Emergency app

To install this App for the first time, it is very important that you do this via the web on a laptop or desktop – not via your phone.

Once installed, the app should work smoothly on your Android or iPhone.

Do let us know of any problems so we can ask the developers to fix them as soon as possible.

Empowering you on how you use your DMD data

We invite recommendations on how you think it could be developed to help you in emergency situations.

You can email us feedback, and send questions about it and how to use it, at [email protected].

What to do when a child with DMD:

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. 

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. 

Our resources hub

Boy wearing facemask Boy wearing facemask

Treatments and therapies for DMD

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

Current treatments Current treatments
A mother and boy hugging A mother and boy hugging

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
Roan and his brother Raul, who has DMD Roan and his brother Raul, who has DMD

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