Planning for emergencies
Being prepared can make a huge difference.
The importance of being prepared
Emergencies can happen when you least expect them. For people with Duchenne, they can be especially tricky.
If you or your child needs urgent care, doctors and nurses might not always know all the specific things that keep someone with Duchenne safe.
That’s why being prepared can make a huge difference.
Why planning ahead helps
People with Duchenne have some unique needs in emergencies. You can find clear information about these needs in the Duchenne Care UK Emergency Patient and Family Guide. These can also be shared with doctors or an ambulance crew.
For example:
Missing doses or not being able to take them can cause serious problems. Sometimes, extra doses are needed.
When people with Duchenne need operations and require anaesthetics, it's important that doctors know which ones are safe to use. And which ones must be avoided.
If a person with Duchenne needs help with breathing when they are unwell, specific ventilatory support may be required. Doctors need to know that in Duchennne the best treatment might be different to usual
Experts in managing fractures in people with DMD should be consulted when bones are broken. Doctors need to be alert for signs of Fat Embolism Syndrome (FES).
What your emergency plan should include
Having a clear plan means doctors can act fast and do the right thing.
Your plan should include:
Steroid details and stress dosing information
Current medications and doses
Medication lists, recent test results
Contact details for your specialist
Breathing and heart care instructions
Warnings about FES and anaesthesia risks
Duchenne UK Connect
From September, the relaunch of our In Case of Emergency (ICE) app will be available through Duchenne UK Connect.
will make it easier to stay prepared. It will allow you to store important medical details and share it and guidance with doctors quickly. will make it easier to stay prepared. It will allow you to store important medical details and share it and guidance with doctors quickly.
Being ready means you can get the right care, fast.
