This presentation, "The Emergent and Acute Management of Patients Living with Duchenne Muscular Dystrophy," was produced in an effort to educate clinicians in the care of individuals and families living with Duchenne.
The presentation can be watched in its entirety, or viewed as individual sections:
We hope that this information will help to enhance the care of Duchenne patients and families.
Part 1: Introduction to Duchenne Muscular Dystrophy and the PJ Nicholoff Protocol
Duchenne muscular dystrophy is a rare disease. As such, few clinicians will have extensive knowledge in the care management of patients living with Duchenne. This video describes Duchenne muscular dystrophy, as well as gives the background of the PJ Nicholoff Steroid Protocol.
Part 2: Transitioning Patients from Pediatric to Adult Duchenne Care
Advances in care have prolonged the life expectancy of people living with Duchenne, thus creating a new adult Duchenne population. Transition is a process of moving from pediatric/parent centered to adult/patient centered care that should happen gradually and thoughtfully. This video discusses some of the challenges of transition in people living with Duchenne and why it is necessary.
Part 3: The Acute and Emergent Management of Patients with Duchenne
Given the complexities of Duchenne muscular dystrophy, managing the care of these patients can be extremely challenging. This video seeks to aid the decision-making process involved in organizing the emergent and acute management of patients living with Duchenne. This video will discuss respiratory, cardiac and pain issues to consider, as well as the necessity of treating patients with corticosteroid dependence. The PJ Nicholoff Steroid Protocol is discussed in this section.
Part 4: Steroid Management of Patients with Duchenne
Currently, chronic corticosteroids are prescribed for the management of Duchenne muscular dystrophy. The abrupt withdrawal of chronic corticosteroids can result in acute adrenal suppression, which may be life threatening. This video discusses the recognition and prevention of acute adrenal suppression utilizing the PJ Nicholoff Steroid Protocol
Full Presentation: The Emergent and Acute Management of Patients Living with Duchenne Muscular Dystrophy
This video includes the comprehensive presentation, and is comprised of all of the above video segments.
About Parent Project Muscular Dystrophy
Parent Project Muscular Dystrophy's mission is to end Duchenne. We accelerate research, raise our voices in Washington, demand optimal care for all young men, and educate the global community. Support our mission at: ParentProjectMD.org/Donate