An ‘In Case of Emergency’ app has been launched for Duchenne patients and their families, as part of the DMD Care UK project spearheaded by Duchenne UK and the University of Newcastle. The Duchenne Research Fund is proud to be a funder and supporter of DMD Care UK, which aims to improve standards of care for all UK individuals and families living with Duchenne.
As a rare disease affecting around 2,500 people in the UK, many medical practitioners will not have come across Duchenne muscular dystrophy in their careers. In accidents and emergencies, people with Duchenne need special medical treatment, and mistreatment can be dangerous. This means that parents and caregivers are responsible for remembering complex information about steroid dosages, anaesthetics and fracture risks, at a time when they are under stress.
The first-of-its-kind mobile app aims to help to save Duchenne patients’ lives in medical emergencies, by enabling patients and caregivers to fill in a profile with their/their child’s personal and medical needs and emergency contacts. In an accident or emergency, this profile, alongside guidance on treating Duchenne patients, can be emailed to a medical professional as a concise PDF.