Brian Nicholoff has been involved in the Duchenne community since 1987, when his son PJ was diagnosed with Duchenne muscular dystrophy at the age of 4. Brian also has another son, Justin, who is 34-years-old and has a milder case of DMD.
Brian has been involved in Parent Project Muscular Dystrophy (PPMD), Muscular Dystrophy Association (MDA), and Muscular Dystrophy Family Foundation – Indianapolis (MDFF), and now, with Jett Foundation, by creating awareness, advocacy, and funding.
He developed PJ’s Protocol in March of 2015 after his son PJ passed away at 31-years-old. PJ fell resulting in a fracture and was transferred to a hospital where he underwent surgery. After PJ passed away, in reviewing it wasn’t clear that PJ received the appropriate dose of steroids. When steroids are stopped suddenly, it can create an adrenal crisis which is life threatening.
Brian, with the help of PPMD and various neurologists, took a negative and turned it into a positive. “One of the biggest challenges when it comes to these medical situations is accountability,” says Brian.
The mission of this protocol is to provide clinicians with information regarding safe management of corticosteroids and how to prevent corticosteroid withdrawal. The daily dose of steroids helps provide the body with cortisol, which is necessary to give the body enough energy to deal with the stress of serious injury or infection.
It is important to recognize the signs and symptoms of an adrenal crisis, and how to prevent it with the help of steroids. Keep the PJ’s Nicholoff Steroid Protocol readily available to you and your medical providers.
Brian’s advice to those in the Duchenne community is to have faith and believe in the future. When his son PJ was first diagnosed there were no trials or genetic studies. “The light is at the end of the tunnel. It is shining brightly,” he says.
To learn more about steroid deficiency, stress dosing, chronic steroid use, and critical care guidelines join our webinar with Brian on August 25 at 3PM ET.
To register, visit https://register.gotowebinar.com/register/2954885139618937104.
