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 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.
For example:
Missing doses or not being able to take them can cause serious problems.
Infections or surgery need extra attention.
Some drugs and anaesthetics are dangerous for people with Duchenne and specific ventiliatory support may be required.
Treatment needs to avoid complications like Fat Embolism Syndrome (FES) and specific surgical approaches.
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
Our Duchenne UK Connect app, which will be launching in September, 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.
