New app to prevent the wrong treatments being given to people with DMD in emergencies
We have launched a new app to help prevent people with Duchenne muscular dystrophy (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.
Managing DMD in an emergency
People with DMD are not receiving the right care in A&E due to low levels of awareness of the disease and how it should be managed among healthcare professionals. This is particularly critical in emergency situations when healthcare professionals are treating people with DMD.
They need to know about using anaesthesia and opiates for people with DMD. They also need to understand the implications of steroid treatment that many people with DMD receive. It is crucial that they understand how serious fractures are in people with DMD, and how many have heart, gastrointestinal, and breathing problems because their muscles are weakened.
How the In Case of Emergency app can help in emergency situations
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.
The In Case of Emergency app is free to use and can be downloaded here.
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.
Empowering you on how you use your DMD data
The In Case of Emergency app is an enhancement of a previous emergency app that we developed and is the first part of a wider DMD data platform that we are building.
Giving people with DMD and their families control over their data and how they can use it to get the best care and treatment is a central aim of the platform.
The app will be further developed as part of this platform and user engagement is key to its development. 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].