PJ Nicholoff: His Story and The Protocol

PJ’s Protocol

On November 26, 2013 – 9 years ago – one of our Duchenne families paid the biggest price because of the mistakes of their son’s medical team.

31 year old PJ Nicholoff was admitted to the hospital for a fractured humerus and hip about a week prior. He had orthopedic surgery to manage the fractures and was doing well after the surgery.

As is common in individuals with Duchenne, corticosteroids were part of PJ’s daily medication regime. Postmortem medical reviews suggest that he was not administered appropriate doses of corticosteroids while at the hospital. As a result, PJ Nicholoff experienced respiratory distress, shock and passed away.

It’s unfathomable.

Corticosteroid use is standard of care now for most individuals with Duchenne. What happened to the Nicholoff family could easily happen to any one of our families.

PJ’s father, Brian Nicholoff, however, is determined to prevent this mistake from happening again.

In collaboration with Parent Project Muscular Dystrophy, PJ’s family has been advocating, educating and changing medical care for our children with Duchenne for almost a decade. Together, they created PJ’s Protocol, which contains very clear guidelines about how to manage the corticosteroid care of a patient with Duchenne.

Unfortunately, educating our medical team about caring for Duchenne still falls heavily on the shoulders of the parents. The full length video below is intended to make it easier for the families to advocate, especially in times of urgency.

The video explains PJ’s Protocol in full, as well as the bigger picture of Duchenne Muscular Dystrophy and emergency situations. It includes the introduction to PJ’s Protocol, explaining the transition from pediatric to adult care, emergency care and steroid management.

For your convenience, it is also broken down into 4 shorter segments below.

Unfortunately, technology isn’t always as reliable as we hope and it’s always necessary to carry a hard copy of emergency Duchenne procedures. The emergency medical cards from PPMD include not only an abbreviated version of PJ’s Protocol, but also other important emergency info as well.

Words do no justice to the gratitude our community holds for the Nicholoff family. To transform such personal trauma and pain into life savings procedures for other families, our community is grateful. Indescribably grateful.

Thank you, Nicholoff family. Thank you.